I’ve been wanting to do a video for a few years now and have never found the time to do it. Even now I’m typing one handed and feeding Layton. I stayed up until 2am last night after the kids went to bed and got a video made!! Then of course I had issues converting it and uploading it.
Here it is! It shares a quick glimpse of our journey with EoE from January 2010 until today.
You are just a few clicks away from helping my kids one day be able to go to birthdays and eat what the other kids are eating.
One click away from my kids going out for breakfast on their birthday.
One click away from going to the movies and buying a treat.
One click away from a family vacation, which is virtually impossible unless i pack an entire trailer of food.
One click away from my kids going to the dairy bar or getting a treat from the ice cream truck.
One click away from me not having to pack a duffel bag of food every time we leave the house for more than a few hours.
I think most importantly, one click away from me cooking one dinner for my family that we can all sit down and enjoy together.
You’re also one click away from helping many families put an end to the staggering grocery bills.
One click away from helping end the outrageous hospital bills that are never ending because of the maintenance of this disease.
Please help us find a cure.
Forgo you’re expensive coffee tomorrow and donate that money to CURED.
Donate what your family would spend when you go out to dinner.
Donate the cost of the candy your child picks out in the grocery line that mine can’t eat.
Every little amount helps my kids come closer to one day being able to eat a normal healthy diet.
Lucky Charms? Eggs and toast? Bagels and cream cheese?
What did your kid have for breakfast?
Mine had a sucker and a bag of elemental formula.
It’s awareness week and that’s just we’re going to do, bring awareness! The boys are all geared up and ready to spread the word.
Actually they’re pretending to be the Wild Kratt brothers.
I pulled these facts from APFED
A group of uncommon chronic illnesses, eosinophil (E-o-‘si-n-o-“fil)- associated diseases, are rapidly emerging as a healthcare problem worldwide. Yet, many patients suffering from these disorders go undiagnosed for years due to a lack of information or awareness of these diseases.
What is an Eosinophil?
A type of white blood cell associated with allergies, parasites, and cancers.
What are Eosinophil-associated Diseases?
– High numbers of eosinophils accumulate in body tissues causing inflammation and damage
– Classified by body tissue where eosinophils accumulate
– Diagnosed and monitored by tissue biopsies
– Chronic diseases requiring long term treatment, with no known cure
– Debilitating diseases leading to missed work, school, social outings
– Delays in diagnosis are common
Eosinophilic Esophagitis (EoE)
– Causes inflammation and damage to the esophagus, affecting the ability to eat
– Estimated prevalence of roughly 1 in 1,800
– Increasing in prevalence over the past 10 years
– Patients may depend on steroids or medical nutrition therapy, sometimes through a feeding
Eosinophilic Colitis (EC)
– Causes inflammation and damage to the large intestine (colon)
– May be misdiagnosed as Irritable Bowel Syndrome (IBS) or Inflammatory bowel disease
– Patients may require restricted diet therapy, elemental formula or chronic steroids
Eosinophilic Gastroenteritis (EGE), and Eosinophilic Gastritis (EG)
– Causes inflammation and damage to the stomach and/or small intestine, often misdiagnosed
– Estimated prevalence of EGE and EC combined is 1 per 3500
– Causes severe abdominal pain, forceful vomiting and/or diarrhea
– Treatment may involve a limited diet, feeding tube and/ or steroids
Hypereosinophilic Syndrome (HES)
– Diagnosed by very high numbers of eosinophils in the blood and tissue
– Causes potentially fatal damage to one or more organs in the body (heart, lungs, gut, skin)
Eosinophilic Granulomatosis with Polyangiitis (Churg-Strauss Syndrome)
– Eosinophils cause damage to small to medium blood vessels (vasculitis)
– Patient may initially be diagnosed with severe asthma
– Causes potentially fatal lung, heart, brain or gastrointestinal damage
– Estimated prevalence is approximately 5 cases per million people per year, with a rate in
asthmatics of as high as 80 cases per million per year.
– Eosinophils build up in the connective tissues that surround muscles, nerves, and blood vessels.
– Arms and legs are primarily affected. Symptoms often include pain, swelling, and thickened and pitted skin that resembles an orange peel.
– While symptoms typically resolve on their own, some cases require corticosteroids and immunesuppressing medications. In many cases, EF resolves in a few years, however, some people have reported symptoms for longer than 5 years, or have reported symptoms resolved and then returned later.
– Eosinophils cause injury and inflammation to the bladder.
– Reported to be more common in males, and may affect both adults and children.
– Symptoms may include painful urination, blood in urine, and pain in the lower abdomen.
-501(c)3 non-profit patient advocacy organization for those living with eosinophil-associated
– Mission is to passionately embrace, support, and improve the lives of patients and families
affected by eosinophil-associated diseases through education and awareness, research, support,
– Raises funds for research of eosinophil-associated diseases through competitive peer-reviewed
These are three beautiful faces of EoE. They shouldn’t have to suffer. Help us find a cure.
It all started April 30th when Nathan left for a long business trip. He was going to be gone for 10 days straight.
I was fine with it.
I could handle things.
I’ve got this!
Hey it’s one less dinner for 10 days! That’s enough to make me happy. That means less groceries and less dishes to clean up!
The kids and I did great the first few days. The only trouble I had was that Gage’s formula and feeding tube supply shipment came 4 days late. Since Tinleigh uses the same exact stuff we were covered. That weekend Gage started coughing. I figured he was getting a cold. I remember Nathan’s comment when I told him “Of course he is, I’m away on a trip”. It never fails that the kids get sick when he’s gone. I tried not to worry about it and we went on with our days.
Tuesday morning Gage was wheezing, Charlie said his throat hurt and Tinleigh was coughing. Well the last two months Charlie has said his throat hurt and he ended up having strep. So I called the doctor and off we went after Gage had a breathing treatment. They did a rapid strep test and it came back negative. PHEW I was relieved. The doctor raised an eyebrow at Gage hacking in the corner. I said he was fine we were on nebulizer treatments. No big deal for us.
I sent both boys to school on Wednesday. Tinleigh woke up wheezing so now she was also on breathing treatments. Around noon the pharmacy called me with a prescription for Charlie. That’s odd I thought. Then it hit me! OH CRAP HE HAS STREP! I immediately called the doctors office and spoke with the nurse. Yes, Charlie’s culture we sent out came back positive you need to go get him from school right now. So I called the school and asked that they get him ready. Loaded up the girls and off we went. When I arrived Charlie was bouncing around the nurses office playing with a blown up rubber glove. She said he sure doesn’t look sick. I said I know but the doctor said he is. So now Charlie can’t return to school until he’s had his meds for 24 hours, which would be friday. What made me nervous about him being in the nurses office were the two pale white sickly little boys laying on cots. What ever they had I knew we didn’t want.
Thursday Charlie had to stay home. He also started running a slight fever. Well crap that puts him out of school on friday as well. He wasn’t feeling too horrible. His throat never swelled, just felt like wood chips in there he said. I don’t know if he’s just tough as nails or if it really wasn’t that bad. Tinleigh was still wheezing and starting to cough more crud up.
Friday Gage tried to stay home but I figured it was just because Charlie got to stay home. He was fine when I dropped him off. Layton, however, had started a little fever as well. That made me nervous. Then around 12:30 the school called me to come get Gage, he puked. OH NO! I was so hoping he was just stuffed from his feed and that made him puke. That wasn’t the case. Gage was the fifth kid they had sent home that day. I got him home and made him a bed on the couch. He couldn’t even keep down a tablespoon of water. After about 6 hours he was begging to eat and felt fine. It was quick but violent. I called Charlie’s school nurse and asked her about him running a fever. I didn’t know how he could have a fever after being on antibiotics for strep. She broke the bad news that unfortunately it wasn’t related to the strep but probably the stomach but going around.
That night Nathan arrived home. Thank you Lord. I felt like I was running ragged. No breaks. I was barely getting showered. Between feeding tubes, mixing formula, holding the baby, feeding the baby, doing breathing treatments, it was a lot. BUT I DID IT! Ten days on my own.
That evening we had a call about a showing for our house, it’s for sale. I laughed and explained how sick all the kids had been and if anyone came in here they would surely walk out with something. So they said they would be in touch Sunday to figure out what day would work next week.
Saturday morning Tinleigh woke up and puked in bed. Tinleigh continued to puke until about 1pm. Really violent and bad just like Gage’s but only for about 6 hours. Layton was still running a low fever. That night we got everyone into bed and I had a beer. Just one. I told Nathan I had a funny feeling in my throat while drinking it, almost like an allergic reaction. It was strange. Layton woke up around midnight to eat. Charlie puked at 2am. Layton woke back up at 3:30am to eat. Tinleigh woke up around 4 I can’t remember why. Then Charlie was up again at 6 vomiting and on the toilet. Layton was back up at 7 and Tinleigh woke up for that day at 8. This mothers day wasn’t starting out very well. I think it was around the 2am vomiting that I realized my allergic reaction was actually me getting strep. HAPPY MOTHERS DAY!
So i got up with Tinleigh and got things rolling as far as getting them all set with food so I could go to the urgent care. I left the house and went to one in a neighboring town because ours wasn’t open yet. Sorry ma’am it’s a two hour wait. Are you kidding me it’s mother’s day? I left and drove back to our town. I ran to the store for a few things, dropped them off at home then went to our urgent care that was just opening. I was second in line. My throat hurt so bad I couldn’t talk or swallow. It was so swollen. Well I got quickly bumped to third position because an older man fell outside and hit his head on the cement. Once I got back to my “room” someone else got pushed in front of me because she passed out in the waiting room. They were both taken by ambulance to the ER so I did feel bad for them. Darn it though, I was in pain. They swabbed me. I explained how sick my kids had been and how Charlie and I had strep just a month earlier. My rapid strep test came back NEGATIVE! I seriously almost cried. The nurse had swabbed me but the doctor still wanted to take a look. I opened my mouth and her words were “holy cow! That’s swollen, you will get an antibiotic for that!” phew. They didn’t even bother sending out the culture. Both times I had it recently it wasn’t the sides of my throat that swelled but instead the top part. It was so swollen it hung down past that thing that hangs down in the back of your throat. I left and got my prescription – three pills three times a day.
I wanted to crawl in a hole for the day I felt horrible. I knew though how much work it is taking care of all four kids plus they all felt like crap. Layton was now coughing. Tinleigh was now very congested. Well except Gage. He felt fine. Just very left out and lonely. Poor guy, all he wanted to do all weekend was play with daddy and we had too much going on for them to get some good one on one time. By that evening I was able to swallow a little and I could talk again.
Monday morning. Once again Charlie had to stay home for 24 hours after he had been puking. As I loaded them all up to take Gage to school he said mom my throat hurts. Now he and Charlie had been playing for a good hour before school. No signs of sickness from either of them. Layton and Tinleigh though both sounded horrible and I was going to call the doctor for an appointment. I said Gage do you want to go to the doctor and get swabbed for strep? Thinking that would freak him out and he would say no. Of course he said yes. So I made an appointment for the three of them and off we all went to the doctor. They swabbed Gage first thing. Then the doctor listened to Gage’s lungs. She then asked about his wheezing. I said he’s wheezing? She said yes and she wanted him to do a breathing treatment right then. Okay sure. Then as she was typing in her computer she says OH! He has strep. Well shit. Swab Tinleigh too please. So she did then she listened to Tinleigh, which is why I had her there. Let’s give Tinleigh a breathing treatment as well. They both sound very bad and I worry about pneumonia at this point. WHAT?! Please don’t tell me that. So Gage and Tinleigh both did a breathing treatment. Gage sounded fine after his treatment. Tinleigh still had some crackling in there. Our doctor was worried about Tinleigh and told me she could really go either way at this point so I needed to keep a close eye on her and keep her on breathing treatments every four hours. Luckily Tinleigh’s strep came back negative. However, since we have it in the house and Tinleigh sounds like she does the doctor wrote her a scrip as well to play it safe. Layton’s congestion was still all in her head. Being so young though it is dangerous and could turn very quickly to her lungs just like with Tinleigh and Gage. So now i’m on the watch for that to happen. I hate being on the verge of super bad illnesses like that.
Home we went. I had a friend get meds for me as I took the kids home and got everyone settled. I had to get a game plan in my head because we had a showing scheduled for wednesday at 5pm. I wasn’t back on my A game yet but was starting to feel much better.
Tuesday Gage had to stay home because he needed to be on his antibiotic for 24 hours before returning to school. Tinleigh was INCREDIBLY whiney and stuck to my leg. I wanted to scream. I had so much to get done to be ready for Wednesday evening. So between her, the baby and Gage I managed to get quite a bit knocked out and ready. Then that night Tinleigh puked again. She couldn’t have picked a better time. I had Charlie’s dinner ready. Layton was crying to eat. I then had to throw Tinleigh in the tub. Gage didn’t want hooked up he wanted fish for dinner. It was total chaos. Of course this was all before Nathan got home from work. I was going crazy.
The next morning both boys went to school. I had a game plan. Unfortunately it didn’t happen. Layton didn’t sound good and I needed her to be seen. Our pediatricians office is 35 -45 min away so that cut a chunk out of my day of preparation. Luckily her lungs were still clear. She was having post nasal drainage and had a touch of the flu. Imagine that. We ran back home and I had to re-evaluate what I thought was important to get done. Tinleigh was still super whiney and clingy. She had vomited again that morning. Both times though it was formula and black olives so i’m beginning to think she can’t tolerate black olives. Three o’clock I left to get the boys from school. We ran back home and a friend came over to help me. Gage had ball practice so we would leave a few minutes before 5 and head there. Well I had everything ready to go, kids were fed and the house looked presentable. About a half hour before we left it started raining. Well in my panic of cleaning I didn’t notice the boys were out playing in it. I was so mad. They got changed and at ten till we left. IT WAS POURING at this point. There the people sat in the driveway ready to come in. So I loaded the kids in the car and we headed to walmart. I knew practice had been canceled. No sooner did I get everyone in and headed towards the diapers did I get a phone call. “Kara, there’s water coming in the laundry room from outside”
I rushed home. I called a neighbor and asked if I could bring the kids over. I quickly ran in the house to see the damage before running them over. That did it. I finally had a break down. Seeing a few inches of water in my laundry room and along two walls of our family room did me in.
This super woman cracked.
I stood there holding Layton and cried. Only for about thirty seconds though because I had to get this taken care of. I rain the kids to the neighbors house then rushed back home. Luckily the agent showing the house moved the boxes out of the laundry room. They were boxes of Gage’s and Tinleigh’s formula and supplies. I will be forever grateful she did that. I sent her an email later that evening thanking her and explaining what she had saved.
The rain was so hard and fast the drain outside the laundry room door couldn’t handle all the water. So into our house it came. (Luckily, not our problem. It’s a rental and no thank you we will be buying another house. Not this one with water issues.)
So I hope this explains my lack of blogging, yet again. Maybe these last few weeks of May will be enjoyable.
Charlie did inform me next week is River Monster week on animal planet.
You taught me to be a hard worker.To never give up.Now that I have my own kids my only hope is to teach them the sameI always knew I wanted to be a momI just never knew it would take so much workMakes me appreciate all you did even moreI’m trying my hardestI hope I’m making you proud!
Everything I know and do as a mom I learned from you.
It’s very frustrating to make a new recipe and have it taste bad. Imagine trying to make a new meal for your allergic kiddo and have them not like it. Then imagine having to quickly make them something else for dinner, after you’ve already made three other dinners that are safe for your other family members. The frustration is not enjoyable. You are so excited to have a new meal for them and then to have that excitement squashed like a bug. It’s my own kitchen emotional roller coaster.
Now I want you to think about your weekly grocery bill. Go ahead and multiply that by lets say 3. Then times 4 for four weeks in a month. There’s our bill. Even with two on feeding tubes it’s expensive because of the special foods they can eat. Your bread costs on average $1.50, ours is around $6.00. Gages special chocolate chips are $5.50. We also eat a lot of produce, out of season prices go up. Feeding allergy kids isn’t cheap. My boys aren’t even in their teens yet. Thank goodness they aren’t on a beef only diet the way prices are going up. I may start raising hogs though.
Enough rambling on that, onto my main point! Throwing money in the trash.
I found Gage a new brownie mix today and wanted him to have it after school as a nice treat. The cost was $4.99. Seriously, it wasn’t even Ghirardelli or any other fancy chocolate. It was good ol’ Betty Crocker giving it a shot in the world of allergy food. The ingredients call for two eggs. Well Gage can’t eat eggs, he’s anaphylactic. So in Betty’s defense I couldn’t make these as called for. I used Gage’s butter which is smart balance light. For the eggs I used a mixture I’ve been using forever: 2 tsp baking powder + 1 Tbsp water + 1 Tbsp oil
I found this mixture in here You can order one HERE
Once I mixed the batter I found it was very thick. So I added just 1 Tbsp more water. The box said it would be thick but I didn’t have enough wet ingredients to absorb all the mixture. Then in the pan it went. While baking the brownies smelled delicious. Just like normal brownies. However, when the timer beeped they looked like a hot bubbling mess of tar. The box said when inserting a toothpick it shouldn’t come out all the way clean. But this was a mess. So I baked them an extra few minutes. Now they were starting to smell burnt. I pulled them out. This recipe definitely needs the eggs so they will rise. I was running around like crazy mixing formula and feeding the baby before I had to go get them from school. So the brownies just sat, I didn’t really check them out too closely.
They did taste good! The boys didn’t finish their “brownie”, but they ate a few bites. It sucks to see their little faces all lit up, then watch them eat the tasty treat and see their faces sink because it’s not what they were expecting. So there goes $4.99 in the trash.I will give Betty an A+ for flavor. However, she needs to come up with an egg free recipe and she’ll sell millions. So if you can eat eggs, but need a gluten-free brownie, give these a shot!
Little Layton is two months old!
I am pretty sure I’ve been blessed with the most easy baby. When I say easy I mean because all she does is sleep, eat and poop. However, she does have her own little issues. She is super cranky some evenings for hours, but it’s not every single night.
We arrived home on a Friday. She was jaundice. I’ve dealt with that before with Gage, but with him they sent us home from the hospital with a billy blanket and all was good. Where we live now they make the baby stay in the hospital. Layton was one point away from having to stay. For the next four days we had to either go see the doctor then go to the hospital for a blood draw or just go get a blood draw. Each day she was a point away from having to stay. The number changes every so many hours that they’re born. On the forth day her number finally started to come down. On the third day Charlie went with us to see the doctor because his throat hurt. He never complains so my instincts kicked in something is probably wrong. Sure enough he had strep. So now I have strep in my house with a 5 day old baby. Gage had strep a few weeks prior and was still making a funny sound in his throat. We didn’t know if he was flaring because of his EoE or if he still had some lingering strep, so back on antibiotics he went. Doctor said it wouldn’t hurt because he could easily get it again since Charlie now had it.
Two days later Tinleigh started another feeding tube infection. I quickly jumped on that and took her to the doctor. They wanted me to put tree tea oil on it. Nathan was furious, as he’s not into homeopathic treatment. The doctor refused to write another scrip for an antibiotic. So I bought the tree tea oil and did as she said. It worked for a few days to help calm the redness but then she became more flared around the site. Our pediatrician was nice enough to call in a topical antibiotic. Luckily that killed it. So the consensus is that Tinleigh carries the strep virus on her skin and moving forward we will treat her button with the topical antibiotic. If she repeatedly gets these infections then we will have to go into the button site itself and do a little biopsy to try and figure out any underlying causes to kick this stuff once and for all. It’s been a solid month now since she’s flared at her button site, knock on wood we’re done with infections. This was her third one.
Because of her jaundice I was told I needed to give Layton some formula bottles along with breastfeeding to help flush the jaundice out. So we started her on nutramigen. Things seems to be going well. Then the reflux really kicked in, so we thought. I kept hearing this noise in her throat like reflux coming up. Over the next few days it got worse. I called our pediatrician and she called in zantac. On the evening of day 10 Layton’s breathing was very labored. We could see her neck sucking in and her little lungs retracting. So off to the ER at 10pm we went. Layton’s diagnosis is laryngomalacia, a.k.a. stridor. Laryngomalacia (literally, “soft larynx”) is the most common cause of stridor in infancy, in which the soft, immature cartilage of the upper larynx collapses inward during inhalation, causing airway obstruction. *wikipedia* I was told that it could take a year or longer for her to outgrow this. She makes this horrible breathing sound 24/7. Typically it gets worse at night. Nathan has moved to the couch because he can’t sleep listening to her. I’m just exhausted and can sleep through it. It’s when she stops making the sound for a few breaths that I wake up.
So now I have a noisy infant. The sound is just very unsettling. You want to do something to help her, but you can’t.
A few days later Gage spiked a fever and vomited. That same day Layton had her two week check up and was finally back up to her birth weight.
The following Monday Layton had her first GI appointment to discuss her stridor and reflux. We switched Layton from the nutramigen to neocate infant curious to see if it would help her reflux. Unfortunately it made things worse. The second day on it she started projectile reflux. So the doctor wanted her back on the nutramigen and put her on maalox to help ease the pain of the reflux. She also ordered an upper Gi study for her to make sure things were all formed properly in her little system.
Once again at the end of the week Gage spiked another fever and was wheezing.
Monday morning Gage had an ultra sound on his cyst located on his belly. It had been a full year since we first found it so it was time to check it again and make sure there were no changes. Luckily everything checked out fine.
Layton had her upper GI the day after and everything looked good on her insides too. The next day though her tiny butt broke out in a blistery rash. It took a good five days to get it cleared up. The super bad thing about that rash was along with it came blood in her stool. So after a couple days of that happening I stopped breastfeeding and supplementing with the nutramigen. We went straight to the neocate infant. I always hate when I quit breastfeeding. I love that bond and it’s hard to break. It’s something a mom only gets to experience with her child for a short time of their life. Anyways, we also had to start her on omeprazole. The neocate is a thinner formula which caused her reflux to become worse. We hoped the omeprazole would help the reflux.
The day after we switched everything with her Charlie came home from school and before bed told me his throat had hurt all day. It had been a full month since he last had strep but I figured we better go to the urgent care to be safe. Sure enough he had strep, again. We have never had strep until this year. So I was concerned he had it twice so quickly. Unfortunately as we were getting his scrip filled my throat started hurting. By the next morning I couldn’t swallow my own spit. So off I went to the doctor with Charlie, Tinleigh and Layton in toe. Sure enough I had it too. Lucky me, the next day was my 6 week check up after having baby.
The following week Nathan was out of town for work and the kids were off on spring break. NOTHING HAPPENED! I couldn’t believe it. One thing that did happen though was that Layton was getting better. Her reflux was becoming less and less. I wasn’t changing her bib every hour anymore.
The next week was scope day for Gage and Tinleigh.
Here we are today. Layton’s two month appointment.
Wow! We’ve been busy, but we made it. I guess after having a couple kids you know what to expect. After having a few more there’s no time for recovery and you have to jump right back into things. I think I’ve had a handful of days since having Layton that I actually sat around and relaxed. Luckily my body recovered from birth very quickly, like in two days. Today is one of those relaxing days, I actually had the chance to blog! The funny thing is I’ve become so accustom to constantly being in chaos I have a hard time just relaxing and sitting. Hopefully things will slow down now since we’re out of cold and flu season. Things seems to be settling with Layton and soon I’ll be able to blog more.