LIVING

With EoE, Allergies, Asthma and a G-Tube

It Hit Harder Than I Expected.

This is long…

Gage has been trialing dairy. He had been begging to trial it. Our GI said okay, let’s just let him trial it and see what happens. The thing about dairy is it’s a huge trigger for the majority of EoE kids. The last time Gage had dairy he was 4. It was the very last thing we removed from his diet before he got his feeding tube.

Gage has had symptoms. He’s typically not symptomatic. He has had blood in his stool, his throat burns, chest pain, reflux, dark circles around his eyes… all signs he was failing. I only knew about the eyes and blood. He was keeping the other stuff from me, but told the GI doctor at our appointment. The thing about my boys is they don’t tell me these things unless it becomes unbearable. They’re tough kids. 20160128_080054A few days after the check up with GI Gage had his dairy trial scope. I knew it probably wouldn’t be good. After the scope the doctor came out with pictures as usual. He said it really hadn’t changed since his last scope, which was a fail. So I assumed dairy was a fail, but had hopes that maybe it was a low fail and it may be something he can have every now and then. He has so many Ige allergies it almost seems like we’re running out of options to trial. Ige allergies are separate from EoE triggers. They can sometimes cross paths, but if he’s having a reaction to a food he’s not going to trial it in fear of an anaphylactic reaction. 20160128_095525

Today the nurse called me with the results. Dairy is a huge fail for Gage. Eosinophil counts should be zero in the esophagus. Gage’s mid esophagus count was above 120, his lower esophagus was above 100. We will have to remove dairy for 6 weeks to let him heal and not add anything new in. We then need to decided if we want to wait 2 more weeks and scope him to make sure he is back at zero. We had removed rice, his first passed trial, because his numbers continued staying elevated. Which I think we will scope at 8 weeks. Then he will begin a lamb trial. With $5 strawberries and blueberries right now, along with $6 bags of shrimp and Tinleigh’s $5 chocolate chips why not add a super expensive meat. I may need a go fund me page just for our grocery bill. 20160128_100201

I am so sad for Gage. I don’t even want to pick him up from school today because I don’t want to tell him it’s a fail. Dairy was his dream food. He can’t have it, probably, for the rest of his life. This disease sucks. I can’t stop crying today. It’s rough on a mom. I know it’s him going through all of the scopes, skin prick testing, allergic reactions, pain from food trials, disappointment from failed scopes, it breaks my heart though to watch him endure all of this. It’s becoming harder and harder for me to stay positive for him, but I do.

This was a hard year for me. I’ve spent the last 6 years navigating this disease for 1, then 2, now 3 kids. I’ve learned so much about food, ingredients and have memorized so much. I’ve learned to keep them safe and taught them how to keep themselves safe. Crossing into 2015 I sort of took a step back and focused on myself for a bit. Something I hadn’t done in a long time. I chopped my hair off, got glasses that I had been avoiding for 10ish years, got myself into shape and started delegating jobs around the house so I didn’t feel so overwhelmed. It was the scopes in June that it hit me. I was feeling really good about life then I got the phone call that they had failed their scopes. I’ll never forget the feeling I had after that call. It hit me like a ton of bricks. Sort of like a back to reality hit. I cried and was really upset, more than I normally am. It really got me thinking and I’ve had a million conversations in my head the rest of the year.

I think I’ve entered the next phase of a mom with chronically ill children. The first phase was figuring everything out. Not it’s just a this is life, forever, phase. The reality is, it’s really sad. Do other moms like me go through these phases as well? It’s exhausting to think about. I don’t know why, but I feel really emotional now about the kids when it comes to EoE. Maybe my mind was so occupied before trying to figure everything out that I didn’t really see this lifelong disease for what it is. Now that I seem to have a lot more knowledge I can see the LONG road ahead of us. It seems like yesterday that Gage was diagnosed. It’s been 6 years. It flew by so fast.DSC03429

I’ll never forget the first few videos about EoE I watched in horror thinking that will never be my kid and we’re going to beat this. Boy was I wrong. Maybe that’s also part of why I feel the way I do now. I am exhausted from hearing blow after blow for them when it comes to more Ige allergies and more failed scopes. I know that’s how it’s always going to be. Today when I told Nathan about Gage’s scope results and how I just can’t quit crying for him he told me “Gage is strong. I need to get it (crying) out of my system and be strong again for him.” He also said “You are much stronger than you should be asked to be.” He’s right. That makes me wonder, maybe I’ve just held all the tears in for 6 years and I just can’t anymore. I don’t know. It feels like I’m somehow on the other side of things now looking in. Does that make sense? Maybe this seems silly to some for me to share all of these emotions, but there may be another mom out there wondering and feeling the same as I do. My blog has always been to help others stay positive and keep going. I have hopes to let other moms know, they’re not alone and that I’m not some wonder woman. I have feelings too. I’m going through my own journey as the kids face a chronic illness.

I do know that we will move forward as we always do. Gage and I will probably share some tears tonight. Tomorrow is a new day and this is our life. We will focus on something happy, like our upcoming vacation, and push the bad aside. Please lift Gage up in prayer that he has the strength to keep moving forward with a positive attitude. I know that God will give you, at times, more than you can handle. That’s when you lean on Him for guidance, strength and all you need.

Isaiah 26:4

Trust in the LORD forever, for the LORD, the LORD, is the Rock eternal.

If you have a $1 or two to spare, please donate in our name to CURED and help us find a cure so one day Gage, Charlie and Tinleigh can eat food again.

February 2, 2016 Posted by | Gage's allergies, LIVING | , , , , , , , , , | 4 Comments

2016

In January I took all 4 kids to see the GI, that was an experience.

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We know now what we’re doing with each one for the year.

Charlie: he is currently trialing shrimp. We thought it was going well until he had a reaction at dinner. Not a major one. Itchy bottom lip, itchy fingers and the outside of his throat was itchy. We will try it one more time to see if maybe there was some cross contamination with that bag of shrimp. Charlie will be scoped in March as long as we continue trialing shrimp. Next trial will be eggs, as in scrambled. He already passed eggs baked in things. After that he’s pretty much done. There isn’t anything else on his do not eat list that he doesn’t have and Ige reaction to. We will also be keeping a close eye during scopes as to what else is going on in Charlie’s esophagus.

Gage: He will continue food trials. He hasn’t grown much this past year and GI is concerned a bit about that. So we’re going to give him until June in hopes he’ll have a growth spurt. If he hasn’t grown much more then GI wants to look at his growth hormones and make sure everything is in check. His feet just grew a ton so I’m thinking he’s about to shoot up a few inches soon.

Tinleigh: Since Tinleigh’s last horrific scope we are going to let her go at her own pace. The doctor had a sweet talk with her and reassured her that everything will be fine. She told her that when SHE decides she wants to be scoped so she can move forward trying new foods then we will. Tinleigh is currently trialing black beans and it seems to be going okay.

Layon: She is such a picky little eater and some days won’t eat hardly anything. GI wants me to just treat her as a picky eater for the next 6 months. Keep introducing foods over and over and over. Do not let her graze and sit her at the table 5-6 times a day to eat. If she’s not eating in 6 months we may scope her again. Her favorite food right now is ice chips. She chews things then spits it out. It’s frustrating to have a “normal” toddler. Of course in the back of my mind I worry she has it. However, I have to try and stay positive and believe that she doesn’t.

February 2, 2016 Posted by | Charlie's allergies, Gage's allergies, LIVING, Tinleigh's allergies | , , | Leave a comment

Tinleigh’s Two Year Tubie Anniversary!

It’s been a fast two years. DSCN3970  The ordeal of getting Tinleighs tube is now like a dream. Here we are now, with a pretty healthy thriving little firecracker. camera 471I can’t say I am completely in love with her tube, I will always have a deep hurt that she had to get one. I can say it has probably been a life saver for her. Tinleigh has grown an incredible amount these last two years. She is definitely a healthy little girl and is getting the nutrition she was missing out on trying to battle EoE with diet elimination.camera 222
Tinleigh has a love/hate relationship with her button as well. I would guess almost every EoE kid does. Tinleigh doesn’t really like to use her button. We still do, but given the option she would rather drink her formula. She was drinking the formula before the button was placed but we couldn’t get the required amount down her, thus the tube. camera 193She’s always been a very oral kid, she use to graze on food all day long. So I understand why she would rather drink it. We do have our days though when she refuses to drink and refuses to let me hook her up. Those are the days I loathe. She also has days that I could stuff her full of formula but she still wants to eat. Eat real food. She only has blueberries, black olives and cocoa that are considered safe for her. She’s failed almost all of her scopes. I believe she failed 8 foods since getting her tube and has passed 3. She is currently trialing black, white and red beans. camera 229How is the trail going? I have no idea. I thought she was passing all of her other foods she trialed. Her scopes told us other wise. She just doesn’t have syptoms that typical EoE kids have. There’s a good and bad side to that. Wonderful she can eat and not be in pain. Bad that she can eat it, not feel pain yet fail. So there’s no connection there for her to not want to eat it anymore. We won’t know until she’s scoped if beans are a pass or fail.camera 356 When is her next scope? That’s up to her. She doesnt want to go in that white room and doesnt want the doctor to drop that thing in her mouth that she feels down to her tummy. wpid-20151001_102024.jpgYou want to have that conversation with her? Me either. So we’re letting her make the decision right now as to when she gets to try new food. She completely understands you have to get checked to try new food. Unless she starts having problems we’re just going to let things rest for now. If that means she trials beans for a year so be it. It’s not what I want for her, I would love for her to gain more foods. However, this is her life, her disease, and I won’t make it more miserable for her. camera 053
Tinleigh definitely lives life to the fullest.phone 462 She’s in dance class. I’m not sure it’s her thing, don’t get me wrong she’s good, she gives it her all. I think she would rather be playing a ball sport of some kind. phone 489
Tinleigh is also in speech. Its her first sort of sit down instruction class. Her teacher has informed me a number of times how much energy and how happy Tinleigh is. I just laugh. She’s very similar to Charlie’s personality. wpid-fb_img_1426644040227.jpg

As far as I can tell Tinleigh is not afraid of the world. She greets everyday with a smile and goes at it with 110%camera 235

What do I see in store for Tinliegh this year as far as EoE and her allergies? We’ve noticed she’s becoming more sensitive to her true Ige allergies. This is not normal says our allergist. So what’s going on? We don’t know. As of now it’s just with wheat and diary. She breaks out in hives and goes into asthmatic fits when she comes in close contact or breathes it in. She did have a coughing and sneezing attack last week when I lifted the lid off a roast that had been in the crock pot all day. Beef is a major allergen for her. Was it a coincidence? Who knows. phone 124I keep her by my side pretty much all the time. I feel safest that way. phone 164

It is not fancy hair, gold jewelry, or fine clothes that should make you beautiful. No, your beauty should come from within you- the beauty of a gentle and quiet spirit. This beauty will never disappear, and it is worth very much to God.

Peter 3:3-4

Tinleigh is a very beautiful little spirit. phone 739She’s got this.

January 14, 2016 Posted by | LIVING | Leave a comment

Beef Pass

Charlie and I took a trip to the GI doctor for a scope and got to spend about 12 together. We had a good time. He talked my ear off about things like the planets, how to create a magnet that would push away eosinphils so kids with eoe could eat again and how he plans to be in the military one day. It was my birthday so he and I got to actually go out to eat at a restaurant just the 2 of us. It’s amazing to watch someone at a restaurant for what they remember as one of the first times. The menu was super overwhelming for him but he insisted on navigating through it alone. I let him. He finally closed the menu and said I’ll have a pancake. Puzzled, I asked him why just a pancake. He said well I would really like the quarter pound bacon burger. I smiled and told him to go for it. He said but it’s $9. I assured him it would be fine this time. 20151221_185545.jpgHe gave it his all but wasn’t able to finish. My heart was full just watching him eat it.

The next morning we arrived at the hospital bright and early as usual. This day Charlie refused the loopy medicine they give them before hand. He was going to try and stay awake through the whole procedure this time. He makes me laugh. 20151222_090555.jpgNeedless to say he failed his mission of the day.

When the doctor came out to talk about Charlie’s scope he sat down beside me and touched my arm. I instantly had an uneasy feeling. I also wanted to tell him if he had bad news to just give it to me, I can handle it. He told me there was no sign of EoE. Then he showed me Charlie’s esophagus pictures. 20151222_193752.jpgMy heart sank. Something is definitely wrong. What is all of that? The Doctor wasn’t sure. Fast forward to today I got a call from our GI. As the GI who preformed the scope had said there was no sign of EoE and Charlie’s counts were the same as they were back in May, 1-2, meaning beef is a pass. HURRAH! Now, onto that mess. They don’t know what it is. They checked for Barrett’s esophagus. That came back negative. For it to be Barrett’s he would have to have stomach tissue in his esophagus. Charlie just has esophageal tissue. Barrett’s esophagus typically occurs in people in their 50’s and 60’s that have untreated reflux. Charlie is on a high dose of reflux meds and has been for quite some time. The doctor wasn’t sure if they’re watching Barrett’s esophagus develop or what’s going on. They had never actually watched it develop in someone. We don’t want it to be Barrett’s though. Barrett’s can lead to cancer. Our plan is to let Charlie trial another food, either shrimp or eggs. He is currently eating eggs baked in things but not scrambled. He is scheduled for a scope at the end of March. We also upped his reflux meds. Even though he is on a high dose, upping it can’t hurt. Switching to another medication won’t make a difference. If he is developing Barrett’s it can be painful, we want to minimize that.

Could all of that stuff go away by his next scope? Yes. In that case we may never know what it is/was. So now we wait. I am to listen to Charlie for complaints of more chest pain, reflux symptoms, etc. He has no clue any of this is going on inside of him. Since we have no answers we don’t want him to worry or imagine symptoms he doesn’t really have. The doctor told me to put it in the back of my mind and not to worry about it. Yeah, right. We’ll see what’s going on and hopefully have some sort of better answer after his scope in March. If it’s still the same in March with the same biopsy results then we’ll check him every 3-6 months after to keep a close eye on it.

When I told Charlie today that he passed beef Gage was in the room. Gage started crying. He’s having a rough time still wanting all food. I think my plan of teaching them to be happy for one another was a good one, but in our reality can’t really happen. Gage wasn’t mad Charlie passed, he was just hurt it’s not him passing foods.

Say a little prayer for both boys please. 1 016

 

December 28, 2015 Posted by | Charlie's allergies, Gage's allergies | , , , | Leave a comment

Nippy Twinkle Toes has EoE

I forgot we had done this!!

LIVING

Nippy is our elf.

With  heavy heart I learned he has been fighting a silent battle with EoE.

We had no idea.

I thought the rosey cheeks were normal but turns out it’s eczema.

wpid-20141215_212743.jpgHe wears gloves to cover the scaly skin he has on his little elf fingers. wpid-20141215_212605.jpgHis diet consists of candy, candy canes, candy corn and syrup because he’s allergic to everything else.

Poor Nippy.

He definitely chose the right family to join.

Last night Nippy Twinkle Toes underwent surgery and he received a feeding tube just as Gage and Tinleigh did. His EoE was out of control and they couldn’t get his numbers down. We are really praying for a clear scope for Nippy come March.wpid-20141215_222503.jpgwpid-20141215_222526.jpgwpid-20141215_222547.jpg

We wish Nippy the best of luck.

Check out Cradle the Moon for your elf bookbag.

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November 30, 2015 Posted by | LIVING | Leave a comment

Failed scopes, again

I ran our bags out to the car and came back in the house to get Gage and Tinleigh. We’ve done scopes for 5-1/2 years now. My kids are pro’s, unfortunately. I knew I could handle 2 of them on my own. As I walked in through the door I could see huge tears building in Gage’s eyes. He asked me if Charlie could come along. I told him siblings aren’t allowed, unless they’re having a procedure done. Gage must have hugged Charlie 10 times and sobbed every time. It was so sad. He just didn’t want to leave his best friend. We got in the car and went down the road for gas. Gage sobbed the whole way there, uncontrollably. I think he just had some built up emotions he needed to get out. I told him to think of it like the school day. He told me they see each other at school. So I broke out the suckers I had reserved for later down the road. It helped dry up those tears.

About an hour into our drive something must have clicked in Tinleigh’s mind because she started in. She didn’t want to go get scoped. She didn’t want to see the doctor. She didn’t want to try new foods. She wanted me to stop the car, turn around and go home. She didn’t let up. She cried, Gage cried. It was the least fun car ride. Tinleigh continued on for the next 2 hours.

When we arrived at the hotel we checked in. They showered and we crashed for the night. Did you know that sleeping with two kids in a king size bed they can still manage to turn themselves sideways and kick you? I of course started a headache during the car-ride from stress and instead of going away while I slept it grew. Up super early, because we were first appointment of the day, I knew I was brewing a migraine. I had no medicine with me, neither did the desk clerk. Tinleigh was already crying again. wpid-20151001_082634.jpgUpon arrival they wanted the kids to put on their gown before getting weighed. There went Tinleigh again. I somehow convinced her to put it on. We got all checked in, met with the doctor, anesthesiologist and the O.R. nurse. We have a family history of malignant hypothermia so being first before the machines are used is important. My kids are also anaphylactic to egg and soy, which most drugs used to knock them out with are based with, so getting their meds to be put under figured out is always exciting for the anesthesiologist. They’re some of the most little complicated people.

The nurse came and gave Tinleigh some medicine to make her loopy. Tinleigh sat on my lap and finally started to relax. Gage laid on his bed and chilled. Thankfully he was calm. wpid-20151001_082617.jpgOnce Tinleigh was, what we thought, completely relaxed the nurse came to get her. Let’s just say Tinleigh verses oral versed, Tinleigh prevails. She immediately began to freak out. She was not going to sit on her bed and go for a ride. So the nurse and I agreed I would carry her to the doors. Down the hall we went. Tinleigh got loud. She was in complete freak out mode. If you’ve never met Tinleigh and never read my blog before let me just share that Tinleigh is a beast when she gets worked up. So at the doors I handed her off to the nurse and told her I had to go to the potty but would be right back. Yeah, that line didn’t work this time. She screamed as the doors closed behind them. Have I mentioned anything about my migraine? Yeah it was in full effect now. I went back with Gage and fell into my chair. I felt horrible. Not just my head, but for Tinleigh too. She had never been that upset before. I knew that she needed a break from scopes for a while.

The anesthesiologist came back after a short time to prep Gage. She looked at me and said that was horrible. She said Tinleigh was so out of control. She then began to drill me on not getting the kids scoped and why can’t we just let them eat….. My head hurt so bad I wanted to puke on her crocs. I was in no mood to be “yelled” at by someone that didn’t understand the disease. So I told her we were going to give Tinleigh a break for a while. About 15 minutes later Gage was ready to go. He had already gotten his loopy meds and was ready to go. Back he went with no issue. I then went in search of some Excedrin. I luckily found an $8 box of them in the gift shop. I gagged a couple down, drank a advocare meal replacement shake and headed back into the waiting room to get myself together. I had about 20 minutes of down time and it was just enough time that my headache started to let up.

The doctor came out to discuss how things looked. I had never met him before, you don’t always get your GI doctor unless you request them. He was super nice but his English wasn’t so good. All I could think of was the Swedish Chef on the muppets. I needed that comic relief.  He told me they didn’t look horrible but there were signs of the disease. That wasn’t what I wanted to hear. He said the nurse would have the pictures when I was reunited with the kids.

A refresher – Gage’s last scope was 50 eosinophils in the mid esophagus and 80 in the lower. We removed sweet potatoes and broccoli, which he had been trialing for 8 weeks with no signs of a reaction. The GI doctor also added omeprezole in hopes some of those eosinophils were from reflux. This scope should have been perfect for him. He had 17 in the mid and 50 in the lower. Tinleigh’s last scope was 1-5 in the mid and 20 in the lower. We let her keep sweet potatoes and oranges thinking that her eosinophils really were from reflux. So we started her on a cousin to omeprazole, because Tinleigh’s allergic to omeprazole. Her face swells when she takes it. So Tinleigh’s scope should have been clear as well.

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Tinleigh

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Gage

What we’re looking at in these pictures is their esophagus. Your esophagus should look like the back of your hand. Smooth and pink. Gage is probably swallowing as they snapped his picture, he wasn’t that inflamed. But, he was inflamed and those lines running down shouldn’t be there. The same with Tinleigh’s, those lines shouldn’t be there and she’s inflamed also. Gage’s biopsy results show now that he had 15 eosinophils in his mid and 30 in his lower. Which is great improvement. However, having removed the trigger he was trialing and adding a PPI he should definitely be at zero throughout. So we knew that something he had scoped as a pass before has now become a trigger. The thing he eats most of is rice. So out goes rice. Which is huge because he could have rice noodles, rice milk, rice chex, rice crackers, rice krispies and his special birthday cake mix was made from rice. HUGE thing to let go of, and knowing he probably will never get it back is even harder. Explain that to your 7 year old. Rice was the very first thing he passed after getting his feeding tube almost 3 years ago. Tinleigh’s scope results stayed exactly the same. So that means she does not have reflux at all. It means that sweet potatoes and oranges are in fact a fail. The GI doctor thinks it’s probably the sweet potatoes and not the oranges, but since we tried them together we have to remove both. So, Tinleigh is back down to only having black olives, blueberries and cocoa. Life sucks for Gage and Tinleigh right now. However, after removing those foods and giving their esophagus time to heal we are going to move forward and continue to trial things. Gage is going to get to try dairy. Dairy was the last thing we removed from Gage’s diet before he got his button. He was 4-1/2 the last time he had it. He is so excited. Dairy is a huge trigger in the EOE world. My kids are extreme cases though and GI said, just maybe, dairy will be okay for Gage. She said if he wants to try it so bad lets just do it. For Tinleigh, she really wanted me to have her trial avocado, but I reminded her how hard it is to find good ones at the store. She agreed, so we’re going to let Tinleigh try black, red and white beans instead. Tinleigh use to love black beans so I’m hoping she still does. She’s more of a salty than sweets girl. October 21st is the day they both will get to trial these things. We have no future scope scheduled for either. We do plan to just have an office visit in a few months to see how things are going.

Back to the hospital. Tinleigh came out first and was not happy we did that to her. Not happy at all. She refused to let me hold her and sulked in her bed. wpid-20151001_102024.jpgShe wasn’t out of control screaming and ripping her IV out like she did as a baby, thank goodness. This time she was sharing ugly words with me instead. The nurse and I did everything we could to cheer her up. It was pointless. Scary thing Tinleigh told me in her groggy state was that she had a dream the doctor put something down her mouth and she felt it, pointing to her chest, and it pinched her inside. Um… is that possible? Was she not completely knocked out during the procedure? Does she really remember procedure? I told the nurse, she didn’t know what to say. I will be bringing it up at our next appointment. No wonder Tinleigh doesn’t like to be scoped. Tinleigh also asked me if I heard her screaming. She told me she was screaming NO at the top of her lungs. I guess the anesthesiologist was right.

By the time Gage came out Tinleigh was much more awake and happier.wpid-20151001_105209.jpg We rolled a TV over to their beds and they chilled for a while watching a movie.

Gage snapped this picture.

Gage snapped this picture.

We have to stay an hour after the procedure to watch for malignant hypothermia signs, making sure their bodies don’t react to the anesthesia.wpid-20151001_110028.jpgTinleigh showing what the “drink” looks like in her arm. No needles at this hospital, only tiny tubes is what we tell them.

The day was exhausting as it always is. Up early, emotionally draining and still a 3 hour drive back home. I can say I successfully did it all by myself. It didn’t turn out as I had hoped though with their emotions being so high.

wpid-20151011_175504.jpgCharlie update: Charlie has been trialing beef since the summer. We don’t scope him as often because he is at the end of his food list on what he can trial. His reality is he’s truly allergic to everything remaining on his list, which is 17 foods. He doesn’t eat beef but maybe 2-3 times a week. He’s been having some chest and belly pain along with tummy troubles. It’s a few days a week. He’s missed a couple days of school because of it. That throws up a definite red flag. Is it the beef though? So after discussing with with our GI doctor we decided to start him on a probiotic for a few weeks and see if that helps. He’s already on a max dose of omeprazole because he does have reflux. If his symptoms do not improve then we’ll probably scope him. If he does get better then we’ll wait until the first of the new year and scope him them.

wpid-20150929_160917.jpgLayton: All is well! That’s so strange to say.

October 14, 2015 Posted by | LIVING | 4 Comments

Helping hands

The evening I had posted my last post, about finding a new church, I received an unexpected phone call. It was someone from the church. It was a very important person from the church, the Pastor’s wife and children’s ministry director. Completely caught me off guard. Through the grapevine she had heard about my post and read it. She felt it in her heart to call me right then. Let me tell you, I really felt grateful for that phone call.

She didn’t need to call me.

She could have ignored the whole situation.

She wanted to know our story and wanted to help. They wanted to make their church a safe place for my kids.

As you know, I am a HUGE advocate for my kids. However, I’m not one to walk into someplace new and say hey you need to change this and this just for us. So I did feel a bit awkward explaining what my kids can and can’t be around. When we were finished talking I felt so much love, hope and excitement that they wanted us to come back. More importantly they wanted it to be safe for us. They really wanted us to give them another chance. I knew in my heart that it was the right thing to do. The very next Sunday we went and this is what I saw. wpid-20150927_120025.jpgAs a matter of fact there is now no food allowed in the room Tinleigh is in. I could have cried. They didn’t need to go out of their way to make changes for us, but they did. That’s just HUGE! We’re just some little allergy family trying to find a new church home.

A number of times during the week the Pastor’s wife and I messaged about things that are okay and things that are off limits. I would smile every time I saw a message from her. Warmed my heart. I am enjoying sharing my knowledge that may help them to keep another allergy child safe in the future. I even had another mom that attends the church reach out to me who’s son also has a feeding tube. It’s nice to make those types of connections with people who know a little about what life maybe like for you.

I spoke with a number of people in charge of different positions at the church when we were there on Sunday. They all knew of our situation and all wanted to help us feel comfortable. They did. I felt so at ease and also excited, because I had helped a whole new house understand our allergies and how to help keep my kids safe.

I have learned a huge lesson through this, the hard way.

I’ve learned that I can’t just say she’s allergic to everything. That’s way to vague and leaves everyone wide open for disaster.

I’ve learned Tinleigh is VERY allergic to wheat. Those small reactions I’ve seen while she plays with play-dough could end up very bad. Wheat will probably be a food she never gets to eat again. I’ve also learned that a food she once wasn’t allergic to can become a huge allergen for her. Probably holds true for Gage and Charlie as well. SCARY.

I’ve learned that it’s okay to say “Hey, while we’re visiting today would you mind making a few changes?” People do want to help, they do want to keep my kids safe. I’m not being out of line by asking. If they don’t try to accommodate, then we’re probably in the wrong place.

I’ve learned there are still many people out there that want to help and do care.

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Please pray for Gage and Tinleigh this Thursday. We will be making a trip to see the GI doctor and they will be getting scoped to see if we have things under control enough to move forward with food trials. Gage had to remove sweet potatoes and broccoli. We also started him on a medication for reflux. His last scope numbers were as bad as right before he got his feeding tube. If he’s not better this time then we have a big problem and his disease is out of control again, which will mean we have to start removing foods we thought were safe. Tinleigh got to keep sweet potatoes and oranges. She also started a medication for reflux. If her biopsies are bad then she looses sweet potatoes and oranges. This is one of those huge scopes that I am so worked up about. My nerves are about shot. I worry so much about how it will effect them, especially Gage, mentally. He wants to move forward SO BAD. EoE sucks, we hate it. Please pray for a cure. wpid-20150823_184703.jpg

September 28, 2015 Posted by | LIVING | , , , , , , , | 1 Comment

Some people still don’t know!

I have learned a few things this morning

1 – When you say your child is allergic to everything, has a feeding tube, can only eat 4 foods and is anaphylactic to dairy, they don’t quite grasp what that means.

2 – Tinleigh is definitely allergic to wheat.

3 – Being scared of finding a new church is going to be as scary and hard as I imagined.

I dropped off each of the kids in their age appropriate room at church this morning before heading up to the sanctuary. I made sure the room was food free or that they were having a “safe enough” snack that they could be in the room with it. I felt good about drop off and the kids were so excited.

One of the first things I did when I got to the sanctuary was said a little prayer that God would watch over the kids and keep them safe this morning. Service ran long as it may at times. My phone never lit up with a message that I was needed and I assumed all was well. I picked the boys up first, they had a GREAT time. The boys then opted to get Layton next. She squealed with delight when she saw us. She had so much fun in her little room. Then we went to get Tinleigh. As I looked into the room and caught a glimpse of her face it looked swollen to me. I just stood there in the doorway staring at her trying to figure out if it was my eyes or if her face was swollen. I finally stepped into the room and got a good look at her. My heart sank.

wpid-20150920_121903.jpgPoor Tinleigh had three good size hives along with a ton of little ones all over her face. The teacher was helping her find something. Then she pulled the something out. She explained to me they made bread with flour and oil today. Dairy free she said. I felt horrible. I let Tinleigh down. I didn’t explain to the teacher the extent of things. The teacher obviously has no clue about allergies. The hives were VERY visible on her little face yet no one came to get me. I really wanted to cry, I felt horrible.

So today I want you to share this post and I want to spread the word of what an allergic reaction can look like. Also, please take it seriously when someone says they’re allergic to something. They could die.

What can happen during an allergic reaction? What does an allergic reaction look like?

  • Hives and swelling – these can be like you see on Tinleigh above. Red welts, itchy patches of skin that appear out of no where.
  • An itchy mouth. You may see someone pushing their tongue around inside their mouth trying to itch it.
  • Cough
  • Nausea or vomiting
  • Diahrrhea
  • Stomach pain
  • Runny nose
  • Sneezing
  • Itchy ears
  • Lips, tongue and/or throat may begin to swell
  • Trouble swallowing
  • Shortness of breath or wheezing
  • Turning blue
  • Feeling faint, confused, weak or passing out
  • Loss of consciousness
  • Chest pain
  • Weak pulse
  • Sense of “impending doom”

How a child may describe a reaction.
“This food is too spicy”
“My tongue is hot or burning”
“It feels like somethings poking my tongue”
“My tongue or mouth is tingling”
“My tongue itches”
“It feels like there is a hair on my tongue”
“My mouth feels funny”
“There’s a frog in my throat”
“There’s something stuck in my throat”
“My tongue feels full or heavy”
“My lips feel tight”
“It feels like there are bugs in there” (inside the ear)
“My throat feels thick”
“It feels like a bump is on the back of my tongue or throat”
Source FARE

epi1

Source FARE

Please share and please be aware. What if your child has a friend over with allergies? Would you know what to do? Would you know what is safe? Would you be able to spot an allergic reaction? Would you know to give Benadryl or epi pen? You can find a great emergency plan on FARE. Post it in your office, the church, the gym, anywhere!

What happens during anaphylaxis?

Anaphylaxis can happen with in seconds or minutes of coming in contact with the allergen. A flood of chemicals are released into your body by your immune system that can cause you to go into shock. The blood pressure with drop, airways will narrow and normal breathing will become hard to do. Your lungs could collapse. You may start vomiting. Break out in a head to toe rash. It’s very scary. I know, I’ve watched it happen to Nathan.

All I’m asking with this one post is that you share it. Help others who aren’t in the allergy world know what to look for so they can get help. We were so lucky today that Tinleigh didn’t ingest the flour. Just seeing those hives on her face tell me ingesting it would probably have been bad. I do not blame the sweet lady in charge one bit. I should have explained Tinleigh’s situation to her better. Tinleigh probably should have just sat with me during church. I’ve learned my lesson.

September 20, 2015 Posted by | LIVING | 4 Comments

This happened

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Excuse the distorted long alien looking arms. I had to make an appointment with the allergist. I’ve had a number of incidents with a few foods that made me question if I have developed food allergies. I’m almost 39 years old, how am I now developing allergies? OSMOSIS! It has to be. I am some freak, that through the process of carrying 4 very allergic babies, with their daddy’s allergic dna that has absorbed into my system somehow tweaking my dna causing me to now be allergic as well. That has to be it. The reaction that sent me to the phone to make the appointment was a full blown coughing, tight throat, tight chest, scared the pants off me, 4 benadryl worth, Nathan with epi in hand ready, anaphylactic reaction. The reaction, i thought, was caused by onion.
So I went in this morning by myself. We marked about 35 foods to to test. The following came back positive: almond, banana, casein (a protein found in cows milk), crab, halibut, oyster, scallops, soybean.

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Here’s something interesting.  My positive prick only welted up a tiny bit. Therefore,  my reactive foods were tiny as well. However, the reactive food are considered huge allergens eventhough they were small because the positive was small as well. My kids always welt up huge as does their positive. 
I was advised to stay away from all types of fin and shell fish. Stay clear of tree nuts. Two foods i highly suspect and keep having reactions to are garlic and onion. We are going to do blood work on all the positives plus onion and garlic. I’ll have those results in a few weeks. The allergist jokingly asked, and in a way told me I should get scoped for EoE. She said its very odd for these things to come up. If it was one or 2, that would be normal. She said it would make a lot more sense why our kids have the disease at the far end of the horrible spectrum.
I’m going to be honest, this scares the pants off me. I did not enjoy the reaction I had when Nathan almost jabbed me with the epi pen. I don’t want to actually LIVE the allergy life. Let alone EoE. I guess to lead my kids in a positive manner through life, what better way than to be experiencing it myself, right?

August 25, 2015 Posted by | LIVING | 1 Comment

Nine pregnancy tips during nine months

I may be done having babies, but I want to share some tips on what I learned having gone through 4 pregnancies. Each one being very different from each other. I started in my 20’s and ended with my last pregnancy being labeled a geriatric pregnancy. Three were uncomplicated, while the last one was on the high risk end. I traveled, I moved to different states, 3 of my pregnancies I packed up and unloaded a house, I wrangled toddlers and all while far from family and friends. I’m not a doctor and I wouldn’t consider myself a pro, but these are just some things that may help you get through your pregnancy.

  1. Morning sickness may or may not happen. I covered the whole board with this one, from barely noticeable to so sick and dizzy I couldn’t stand it. I used seabands. They really helped relieve the nauseated feeling. I also recommend that even though you feel like you’re about to toss your cookies, force yourself to eat a little protein like a handful of almonds and a few crackers. Having something in your belly does help. If you come to a point where you’re losing weight, you can’t function and your doctor wants you to take something, please do your research. Anything that goes in your mouth may go right into baby as well. Are you aware there is a list of A, B or C medications that rank from safe to unsafe for baby while pregnant? One drug often used for morning sickness is Zofran. You can find information about possible side effects while using this drug during pregnancy here.
  2. Once you’re over the morning sickness think about what you’re eating. I made the mistake with my first pregnancy treating it like a free pass to eat what ever I wanted. It takes 9 months to gain weight and it will take 9 months to get it back off. Remember though, the second 9 months after birth you’re also raising a tiny human. Trying to focus on yourself, diet and exercise aren’t really easily done with a newborn. I’m not saying you can’t indulge, just don’t go over board. You do need a few hundred extra calories for baby, not an entire pizza and pint of ice creams worth. Make sure you’re getting a well rounded diet of fresh veggies, fruits, proteins and grains while keeping the fats to a minimum.
  3. Be active. Keep your body moving. Go for walks. Work in the garden. Clean your house top to bottom. Many woman who have a regular exercise regimen can keep it through most of their pregnancy. You aren’t going to hurt the baby if you go for a jog. If your body is use to jogging and your doctor gives you the thumbs up then go for it! Picture an egg in a mason jar full of water. If you shake it, the egg doesn’t break, same situation in your belly. Baby is just fine in there. By staying active you’ll feel better overall and it will also make getting rid of baby weight afterwards so much easier.
  4. Keep a journal. Keep it beside your bed and make some notes every day or so of what’s been going on with your body. How you feel. When you felt baby move. When is baby most active. Foods that don’t agree with you. Just fun things that will help you with your next possible pregnancy and it will be enjoyable for your kids to read when they’re grown expecting their own babies. Kids are curious about mom and what all she’s gone through for them.
  5. Sleep. Sleep. Sleep. Don’t deprive yourself of sleep. You need it. You won’t be getting much once little junior comes along. Your body needs sleep to recovery daily from growing a person. Let me make that clear, YOU ARE GROWING A PERSON, it takes a lot of energy. If you’re so exhausted to the point that you’re falling asleep at your desk you may want to check with your doctor and make sure you’re not anemic. A few extra hours of sleep each night should suffice if all is well.
  6. Get the details in order. Before your pregnancy due date is at the door step make sure and find out all the details with your hospital and insurance. This will save a lot of hassle instead of making yourself crazy while delivering a baby. Know what you need to do for the insurance company. Visit the hospital maternity ward. Don’t let there be any surprises on babies birthday! You want to be able to focus on baby, not the fact that your husband forgot to give the insurance a heads up that you’re in labor and admitted. Also, have a birth plan ready. Know what your options are for having baby, water birth, standard old fashioned delivery, pain meds, dark room and no people, bright room and your 5 closest friends. You don’t want anything to ruin the special day so know the details before it’s too late.
  7. Things are going to happen to your body. Don’t go searching the web for answers and don’t get on question and answer forums. You will scare the pants off yourself. Just call the nurse line and ask her. If needed she’ll get you in asap to see the doctor. She will know from your description what is going on. You are not the first person that has ever called with this problem and she will know if it’s urgent or not. That numb feeling in your leg, normal. Back pain, normal. Hip feels like it’s about to fall out of the socket, normal. Things going on down there, normal. You can’t sleep laying down because your heartburn is so bad, normal. Pregnancy can be rough on us. I assure you though it’s probably normal, just call the nurse.
  8. What if there’s something wrong with baby. In my last pregnancy I had single umbilical artery. Which means there is only one single umbilical artery in the umbilical cord. It is a common abnormality. However, in 25% of these types of pregnancies it can mean that baby has other abnormalities. Sometimes life threatening. Some babies will have heart problems. We never did any of the in depth prenatal testing with any of our babies. I didn’t do any further testing with this baby either aside from an in depth ultra sound and some extra doctor visits to keep a close eye on my blood pressure. Which, for the record, I am not sure how it wasn’t sky high with this pregnancy having one kiddo with a brand new feeding tube then a second one got hers while I was pregnant. I believe it was my ability to always keep calm. Try not to stress out. Know that everything is in God’s hands. If something comes up during an ultra sound that doesn’t quite seem right with baby, I advise you to gather every single bit of information from the doctor about what’s going on. Do some research. Know the facts about what’s going on. Share with friends and family and have support. Often talking about it can help relieve a lot of stress.
  9. Do something for yourself. I don’t just mean go get your toes done. I mean really do something for yourself. Everything in your life is about to change. You won’t be caring for yourself and your husband anymore. There will be a new guy in town and he will steal the show, along with every selfish moment you use to have to your self. Take a mini vaca if you can. Do things you’ve wanted to do like go to a music concert, drive to that antique village and shop all day, head to your best friends for a girls night. Do something for you. You may have someone else attached to your chest for the next year so take advantage of the YOU time you have left. I’m not trying to make that sound negative, I’m just saying from experience there isn’t much “me” time anymore. Although I don’t miss “me” time, other moms may.

I hope some of this helps get you through. Maybe there’s a nugget of information in here you hadn’t thought of before. It’s just some main pointers I wanted to share from the start to the end. Enjoy your pregnancy as much as you can. It’s a very special time in your life when you have super powers to grow a human! You’ll never experience anything like it again.

Oh! I do have one more:

10. If allergies run in your family here’s what I found out by experimentation. Because of Nathan’s allergies I avoided nuts and fish with Charlie’s pregnancy and nursing. At age 3 I fed Charlie peanut butter for approximately 6 months before he ever broke out in hives. He is currently allergic to all nuts and shellfish. He tests positive to shellfish but can eat shrimp just fine. He can eat also fin fish. With Gage’s pregnancy I ate peanut butter, but no fish. Same during nursing. Gage is extremely allergic to all nuts and can eat some fin fish, but not all, such as salmon. Salmon causes an asthmatic reaction. With Tinleigh I ate both nuts and fish. Tinleigh just tested positive to nuts with her last allergy test a few months ago. She has never eaten a nut because she wasn’t 3 before she got her button.  Tinleigh has eaten fish with no problem. I honestly don’t remember what her test shows to shellfish but she can’t eat it anyways because of the EoE. With Layton I attempted to eat nuts and fish while pregnant. I became allergic to both. Today I can eat peanut butter, but a tree nut will make my mouth become itchy. I have tried fish and my throat swelled along with an itchy mouth. I had a scallop while I was pregnant and had the same reaction, haven’t tried shellfish since. This week I am going to the allergist. I may be some freak mom that because I have carried 4 very allergic kids, they have caused me to become allergic to things. Crazy right? As for Layton she does not test positive to fish or nuts. However, she really hasn’t had exposure to those things and won’t until she is 3. Time will tell. So with that said, should you avoid nuts and fish or does it even make a difference? I’m going to say eat what you want. I don’t think you can prevent it. Same goes with nursing. Some reports even say earlier exposure may reduce their risk of having an allergy. Who knows. Let’s just pray for a cure for allergies and EoE!

August 23, 2015 Posted by | LIVING | Leave a comment

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