I’m a Bad Friend

Wow, this is hard for me to admit. I like to think I’m a good friend. I strive to be a good friend every day of my life. I have a village of friends, either real life or online, who mean the world to me. They’re there for me whenever I need someone to lift me up or give me strength. They’re there when I need prayers or someone to laugh at me. They’re there when I am so overwhelmed, and I just need to cry or scream.

Lately, though, especially these past few weeks, I feel like I’m drowning, barely keeping my head above water, and I’m not returning the love and support I receive from my village. It makes me sad, because I never want my friends to feel like I don’t return their love or devotion. I forget to return messages, or when I do respond, it’s a short one worded answer. Sometimes I just disappear for a few days because it’s all I can do to keep going, and I need to just get through the days.

To my village: I love you all with all of my heart. I am so sorry if I’ve ever made you feel like I don’t. I am sorry I’m a flake and forget to return messages. I am sorry if I disappear for a few days and just pop up later. It’s not you, it’s me. Yes, that’s a bad break up line, but seriously. It’s me. It’s the only way I’ve ever learned how to cope. It’s not right, but it’s what I do.

I am sorry my village. I love you more than I can ever describe. I promise to you, even if I’m not in communication every day you are still in my thoughts and prayers.

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Sneak Attack

This week has been really difficult in Chris’ world. The allergens in the environment are getting to high levels, and we are in the midst of his food elimination diet, so he’s been melting down a lot. Thursday night his eyes were so swollen that I gave him Benadryl because I wasn’t sure if he was reacting to food or not. His asthma has been flaring more as well.

Today we had a party with some family, so we made the drive to the Austin area. We packed his lunch, some snacks, his special cookies (Home Free chocolate chip), and he knew he couldn’t have any of the food there. He had a great time. There was a bounce house and lots of kids. I didn’t see any of my kids for most of the time we were there. Do you know how amazing that was for me? I got newborn baby snuggles from my nephew and NO older kids bugging me. That alone made the 3 hour drive there worth it.

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Towards the end of the party his asthma started flaring again. We did his rescue inhaler, second time today, and got on the road. His coughing never stopped. It wasn’t a normal cough, but his “exposure” cough. It’s dry, hacking, constant. It doesn’t stop. We got to Buc ee’s, used the inhaler again. The coughing didn’t stop, but it wasn’t as constant. Then we stopped for dinner, and the coughing was worse so I gave him inhaler again and Benadryl. Within 20 minutes, the coughing stopped and his color returned to his face.

I have no idea what he got in to. None. It could have been environmental. It could have been nuts or peanuts or banana. It could have been anything or anywhere, and I have no idea at all where it came from. This is the part that sucks. I try to keep him as safe as I can and it still happens. Something has to change, though, but I don’t even know what. I did everything right, and he still somehow got exposed to something.

For now, he’s asleep and his breathing is much better. I won’t sleep much, though, because I will be listening to him, waiting for it to start again.

Small Victories

Zach, 9.5, is my puzzle. He has ADHD, ODD, SPD and HFA. What that all means is that he is high functioning Autistic (Asperger’s) and has ADHD, oppositional defiant disorder and sensory processing disorder. These diagnoses make him sound like a hard kid to handle. Yes he has his moments, and when he was younger it was SO hard, but with age he has gotten better. He is able to self regulate better and communicate better to tell me what he needs. We have learned his triggers, and what helps calm him down. He does spin, bounce, and hand flap. Sometimes he baby talks and sometimes he screams at me and tells me how horrible I am. Some nights he wants nothing to do with anyone and falls asleep across the house. Others, he comes into my room and says he wants to be close and then falls asleep in a clothes basket (true story happening right now). That’s the fun of Zach. You never know which side of him you’ll get.

Not only does he have ADHD but he is also gifted. A child who has problems focusing and self regulating, who is also extremely smart is definitely a puzzle. Public school was not working for my puzzle anymore. He was starting to fail. He was miserable. He wasn’t learning. We were expecting a child who is definitely exceptional to fit into a mold. It wasn’t working.

I just logged into the boys’ online school system and checked their grades. Yes, it was day 1, but Zach has a 100. He sat there for an hour and a half, did 16 science lessons (whoops) and enjoyed every minute. I love that he was able to get up and walk or bounce or spin whenever he needed to get energy out. The best part? He actually likes it. I’m going to get him a desk chair so he can spin and bounce on that, but for tonight I’m celebrating a small victory.

Lots of Pork

I’m meal planning. I started meal planning to help save money, then didn’t meal plan as much because I was being lazy and wanted convenience foods. Now I’m back to meal planning. I have to do this to know what Chris can eat all week. I try to make enough so he will have left overs for lunch, but sometimes that doesn’t happen.

This week’s meal plan, from Saturday to Saturday:

Saturday- Pork fried rice

Sunday- Ham, (going to try this recipe), mashed potatoes (dairy free), green beans

Monday- Pork chops, butter noodles, broccoli

Tuesday- Pork Tacos (ground pork), rice and beans (in instant pot)

Wednesday- Pork Loin, potatoes, broccoli

Thursday- Pork meatloaf, rice, pintos (instant pot)

Friday- Breakfast for dinner

Saturday- shrimp pasta (chicken for other boys)

Sunday- Baked fish (Tilapia), chicken (for kids), roasted potatoes and broccoli

It’s a good thing we like pork, right? I’m not a fish person, but if my baby needs to eat it, I’ll suck it up and try it with him. Stay tuned for the results. I plan on putting my trusty instant pot to work this week!

Why We Homeschool

Pulling the kids from school was not an easy decision. When we moved to this new area of Houston, we picked it knowing the school system had good ratings. We figured “heck, why not try?! See how it goes.” I sat down and had a meeting with the principal of Chris’ school, on their request, so they could know exactly what was needed for Chris. At that meeting, I told them about how much school he would miss due to his illnesses and his EOE. They reassured me it would be no problems. He had doctor’s appointments for his ears, missed school, and I provided doctor’s notes. When he missed a week of school for his surgery, I let them know as soon as it was scheduled that he would miss school, and reminded them again the day of surgery. (It would have been a few days before but it was Christmas break, and nobody there to inform.) Yet, I still was receiving phone calls about his absences, threatening truancy despite medical problems and doctor’s notes.

Ray, my oldest, was being bullied by a group of kids. At first, it wasn’t a huge deal because it was just lunch and everyone was busy eating so it was easily ignored. Then schedule changes happened, and he was suddenly in multiple classes with these boys, plus lunch, and the bullying was non stop. I informed the counselor, the teachers knew but the kid kept doing it. He was making himself physically sick. The AP called and said they weren’t going to let him go on to 8th grade because of all of the days he missed and that’s when we decided we were done. We pulled all of the kids.

Yes homeschool is going to be hard. It’s not going to be perfect, and there will be changes. I have to let go of my own expectations of what I want my day to look like, and know that I have to find curriculum to fit their learning styles rather than try to fit them into the same peg that public school does. Do I think public school is horrible? No. I don’t. It just doesn’t work for my family right now, and that’s okay. I had been feeling like I was being called to homeschool. I knew that public school wasn’t the best fit for them, but I promised my husband I would try. We tried. I knew it wasn’t the best for them, and I knew God was working to make whatever was best for our family to happen.

So here I go. Mama to 5 boys, all with different needs, different abilities. Homeschooling, while my husband drives his truck across the country.

Pray for me?

 

Maybe We Can Do This

So not only are we dealing with EOE, food allergies, and everything that goes along with that, but I am also homeschooling. I pulled the boys from school a couple of weeks ago and have decided that this is what will be best for them, but that’s another post for another day.

Today we had a park day with a dear friend. Whenever I’m needing to recharge my cup and get some good girl time in, she happens to message asking if we want to do a park playdate. It’s like she knows I need her. Have you ever had that friend who makes you want to be a better mom, wife, and follower of God? That’s her for me. She grounds me, gives me peace, and makes me want to be better. After the past couple of days we’ve had, I knew I needed her presence around me. I just hope that I help her as much as she helps me.

She gave me some good tips for homeschooling, and some reminding that I need to be patient and have grace. Sometimes what I want to happen won’t happen, and that’s okay. Sometimes having some flexibility will work, and sometimes knowing that the kids just need to get out and have hands on learning is okay.

After the park, we went to Kroger. All I want to say is thank God for Kroger’s natural living section. I found so many safe things for Chris, and they taste really good! The mac and cheese was surprisingly really really yummy and the crackers are a big hit, even with my non food allergy kiddos.

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I feel like maybe I have a handle on this. I don’t do well with change. I don’t do well with things I can’t control, so until I can find that control, I feel very out of sorts. Maybe, just maybe this is going to work. Maybe I can handle it all.

Oh Instant Pot!

I have joined the ranks of Instant Pot owners. I can’t believe I gave into peer pressure, all while not believing I didn’t get one sooner.

With the food elimination diet and all of the changes, I decided getting one would possibly make my life easier. I mean, how many times do I forget to take out dinner so I just went and grabbed something quick and easy? How many times did I say “we’ll just order pizza”?

Luckily I have a big family so an 8 qt isn’t too big for us. Amazon is sold out of the 6 qt for a few months so we hit order now and bam it showed up a few days later. I admit I was scared. Here’s this new kitchen gadget that everyone promises will change my life. What if it falls short? What if it blows up? What if I hate it? Oh the pressure (giggle)!

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Okay this doesn’t look so scary. Sure it’s a little heavy and maybe a little confusing, but let’s just jump right in! I ran the steam test cycle, and it seemed to work fine. I decided that tonight was going to be my test run and if dinner screwed up,  then we would have sandwiches.

I found a youtube video that was making a pork loin so I loosely followed that. Then I found another where she put potatoes in with her pork loin so I just said “Go big or go home!”

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That’s a Smithfield pork loin, 2 cups of vegetable broth (better than bullion vegetable), and yellow potatoes seasoned with olive oil, fajita seasoning and Monterey seasoning.

I closed the top, hit the meat cycle, put it at 40 minutes (bigger roast and more potatoes) and let it go. Whew that was scary.

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Now I admit I wasn’t sure that it was actually doing something until I started to smell the stuff cooking. It was very faint at first, and then got stronger. Some steam naturally escaped, which freaked me out, but it kept cooking so I just let it do its thing.

After it was done cooking, I let it naturally release for 10-12 minutes, and then released the rest. When it was safe to open, this is what it looked like.

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From raw to completely cooked and ready to eat in about an hour. I am in love with this! The pork was perfectly cooked, and the potatoes were well done and had a ton of flavor. I am very impressed and very happy with my investment.

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If you have any doubts, get one. If you are unsure, don’t be. Take the plunge. Join the Instant Pot club. You will not regret it!

Lots of Tears

Today was our first grocery shopping trip with our major elimination diet. When I say major elimination, I mean I read every label. I did research before going to the store. I was not going to screw up by accidentally getting corn or dairy somehow. The first hiccup we hit was when I asked Chris, stupidly, if he wanted some shrimp ramen for quick meals when we are running late. Then I read the label. Did you know ramen has dairy in it? I sure did not. Then I said, “I wonder about pork…no, Bubba, I’m sorry this has dairy in it too.” His face fell, but he kept on trucking. I skipped the cereal aisle, because I had just bought some, went to the baking aisle where I bought spices for homemade taco seasoning. Store made stuff has corn in it. I had no idea until I read the labels.

Then we went to the chips. I needed chips for the boys and was also looking for crackers. We went down the chip aisle, and Chris got so excited because he wanted his favorite chips. What are his favorite chips? Cheddar Sour Cream Ruffles, which he can’t have. He asked for goldfish, and I had to tell him no. He asked for Cheese Itz, and I had to tell him no. This is when he started sobbing. I just stood there and cried with him as we hugged. We cried because it’s not fair. We cried because his life is not ever going to be normal. I cried because he is so tough and go with the flow, and he just wanted some chips, his favorite chips that he shares with his daddy.

This is going to be a lifestyle change for all of us. It’s not going to be easy, but we will all do it so we can make sure Chris is as healthy as he can be.

It Begins

As y’all know, we moved from MS to TX over the summer. Due to insurance, I had to get new referrals for C to see his old EOE/Allergist team and it took a while to get him in. Today we had his first of many appointments for allergies and EOE.

I was nervous to go. I hadn’t seen them since he was first diagnosed in 2014, and I admit, haven’t really been following EOE protocol to the T. He has been growing, thriving, and not exhibiting any outward signs of EOE like other kids. We had been careful with his anaphylactic allergies but for EOE, we had been taking a wait and see approach. It wasn’t until we made the ear infection connection that I really became serious about this. So anyhow, that’s why I was nervous. He isn’t on any allergy medication, or asthma medication, or anything. We have epi-pens, we have benadryl and albuterol. I just was taking the wait and see approach. I realize that’s not always the best but it is what it is.

They come in, and I apologize for it being so long and him not being on any medication, but because of the move blah blah blah. They were absolutely amazing and understanding. It was so nice being able to talk to an allergist who understands EOE and the intricacies of it. It was so nice having the doctor say “he’s not a normal child, he is not typical, and we will not be doing any immunotherapy testing on him.” (Immunotherapy food allergy testing is where you slowly introduce an allergen by mouth and build up immunities to an allergy. It works, but for EOE kids, it’s not a good thing to do.) She said that she didn’t want to do skin testing on him because he is so reactive right now and being off of medication for so long, he will be hyper reactive. She also didn’t have a fresh banana, and she said that’s the absolute best way to test an allergy. However, she did do blood testing and will determine which skin testing to do based on his levels for that. I am curious to see if he really is allergic to banana and latex, and to see how his blood levels have changed since his last blood test a year ago. I told her what happened the last time he had a skin test done (he threw up about 30 minutes after the test), and she said that can happen especially when they are positive to everything you test them for. She said his peanut allergy is absolutely anaphylactic and I absolutely did the right thing by using the Epi-Pen on him back in March when he reacted to the banana. It’s nice, but scary, to hear “you absolutely saved his life.”

Now here’s the EOE news. He sees the EOE team (herself, GI, dietician) March 13th. Since we know he has EOE, he’s been scoped on EOE protocol and had positive results, there’s no need to wait to see the EOE team to begin treatment. We are starting his elimination diet, based on patch test allergies and his IGE allergies. (For those who don’t know, EOE triggers a different allergic reaction system than IGE allergies.) He will have to avoid chicken, beef, dairy, corn, peanuts, tree nuts, and bananas. I think I’m missing one, but I know he can have wheat, he can have rice and potato. He can have eggs and seafood and pork. Yes his diet is going to be changed, and it’s going to be difficult but if this gives us a beginning to help him feel better overall, then it’s worth it. I would prefer to start with diet elimination, then add steroids, then whatever else, rather than start with the big guns.

It’s hard to see and to think of everything he has to go through. I often question and wonder why this is happening to him. Why do children get sick? Why do children have to suffer more than adults do? Children are innocents and is just plain not fair what some have to endure. I don’t want to make him go through these surgeries and elimination diets and other crap. I don’t want him to have to be basically a test subject for this disease, but if he can help others and help the doctors understand, is it worth it? Isn’t it worth it for him to be able to exist and enjoy life without feeling like crap?

If anyone has any good ideas for dairy free cheese, yogurt, bread? Um, how do I deal with no corn? He can have corn syrup and oil but nothing else corn. I need non beef and chicken meal plans. I need help cooking fish. I don’t do fish, but this is something I’m going to have to start cooking more of. HELP!!!!