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.
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.
We wish Nippy the best of luck.
Check out Cradle the Moon for your elf bookbag.
Little miss turned 9 months recently. I’m feeding her every baby food available minus those with dairy or fish. Shes thriving! She met with GI this week and the decision is we will wait until she’s showing signs of the disease, such as choking. We’re keeping our fingers crossed that Layton may escape the issues the other 3 carry.
Two years have passed since Gage had his tube placed. It seems unreal to me. I have a 6 hear old with a feeding tube. Never in my life did I imagine that happening.
Gage is now over 50 pounds. If I remember correctly, he’s gained almost 20 pounds in two years. As a baby and toddler, before all of this started, he was always in the 70% range for height and weight. He dropped significantly when we had to start eliminating his diet. I’m so happy to say he’s back to 70%.He and I had a quiet moment alone tonight. I told him it’s been 2 years. I asked him how he felt about his tube. Shockingly, he said he likes it because he doesn’t have to eat. Then he giggled. I said you don’t want to eat? He laughed and said no, I like to eat, but doing a bolus is so fast. Then I don’t have to sit there. I’m so happy he’s at peace with it. For quite a while he always said he wanted it out. I’m sure he still does, I didn’t ask him though.He’s been trialing corn since June. I think it’s going fine. He doesn’t have any symptoms and doesn’t appear to have an Ige allergy to it. He will be scoped in January to see if it’s a pass or fail. Gage was at 7 foods on his one year anniversary. He’s now eating: green beans, strawberries, blueberries, lemons/limes, oranges, rice, tapioca, cocoa, black olives. Fish is up in the air and he’s trailing corn. So he hasn’t added much. He had one pass last year then one fail. So he had to remove those trial foods which were pork, tomato and cherry. We got him back to a zero count scope before starting corn. Since moving and finding new doctors he’s been trialing corn about 6 months which is way longer than usual and another reason we didn’t get to add much this year. Gage has had a few strong Ige related problems since we moved. First one happened this summer on my parents farm. Gage went for a ride in one of the farm vehicles. They had been planting soy beans. My kids have been around the farm plenty of times and never had an issue. So off they go then back comes Gage. Swollen eyes and coughing horribly. It is safe to assume now that he has a strong soy allergy. We had never had this problem in the past. Allergist did tell me that once removing things some allergens could become worse if he comes in contact with them. Gage’s peanut allergy has also become worse since diagnosis. We showered him down, gave him Benadryl and an albuterol treatment and he was ready to go play again. No more vehicle rides though.Another reaction Gage recently had was to salmon. That was horrible. We still haven’t tried any fin fish again. I think we might do it at the allergists office. Overall Gage has not let this tube slow him down. He’s still LIVING life to the fullest. Sure we’ve had our moments of he wants this or that. “It’s not fair.” “Just let me try a little bit.” “No I don’t want a book bag/bolus.” Those are the crappy times we are going to have while we fight this battle. It breaks my heart every time I have to tell him no and be a stern mom. It’s my job though to keep him healthy and safe.
While we moved across a few states this summer we got the meet a special little tubie friend whom I had only met on Facebook. It was very exciting for them all to see each other and know they’re not the only one. Gage played on the beach Had a shaving cream fightSwam in a lakeHad a bonfireFlew on a planeSwam at the local poolExploredHe even got to go out to eat!He went trick-or-treating
These four kids are so lucky to have each other. They love one another. When it comes to food and this darn disease, they have so much compassion for each other. They comfort one another, they help give explanations and hope when food is present they can’t eat. They talk about needles, shots and IV’s. They talk about “one day I’m going to eat”. I hate they go through it, but I’m glad they’re in it together.
If she only knew.
I had a great day today. Scrubbed the kitchen. Switched Layton’s wardrobe up a size. Organized the laundry room / mud room. The girls were happy all day, and so was I. Layton discovered her screaming voice. Tinleigh stayed out of daddy’s camo paint. We picked the boys up from school and everyone was in a good mood. Great day all around. We continue with our typical routine for the evening. Boys get a computer turn. They do homework. They eat dinner. Nathan comes home. Total daddy excitement is in the air. They play, shower and eat some more. Typical.
We’re going to back up though to the part where the kids eat. Tonight Gage asked for salmon which he’s been eating since October 2013. I cooked him up a fillet in his butter and served it to him. I then went about my evening as usual. He didn’t say a word, but once Nathan was home I noticed he didn’t finish it and had left the table. Tinleigh had been begging Nathan to eat. He agreed to make her some pancakes and Gage chimed in that he wanted some also. Gage was helping Nathan cook and he asked me if I had fairy godparents what would I wish for. I waved my hands over his body and said I would wish that you don’t have allergies anymore. He replied “and no button too?” I said of course no button! I then noticed his upper lip was red. I took a closer look and asked him if it was itchy. Nathan slightly shook his head yes. Right then, my day turned on a dime. I then noticed a spot on Gage’s chest that had a bump and was all red from him scratching it. Gage didn’t want to but said yes he was itchy, then quickly tried to think of something other than the fish that it could have been from. He told me it was from the corn chips that he had last night. I went for the Benadryl but as I did Gage accidentally burnt his knuckle while helping flip the pancake. Off he went to the bathroom to run water on it. Nathan went in to check on him and I could hear Gage was upset. Nathan returned and sent me in. Poor Gage, his little eyes were all red from crying and he told me his eye itched. We went to the couch and I got some medicine for his little burn. While we sat there he said “Mom, I think I’m allergic to fish” then the tears came. OH THIS SUCKS!!!!! So I held him and tried not to get upset too. It’s been a year that he’s eaten fish. Why now? Why do their little bodies play these cruel games? I tried to be reassuring and told him that sometimes you can be allergic to one certain kind of fish but not other kinds. Which is true. So we’ll have to try a different type in a few weeks. We’ll give his body a chance to relax a little. It’s just so frustrating though, sad too. PAUSE………… (coughing in the distance)
I ran upstairs and Gage was continuously clearing his throat and coughing. I asked what was wrong. He said his throat was gunky. I asked if anything else was wrong and if he felt worse. He said yes. That sudden flash of panic rushed over me. Oh shit he’s having a delayed reaction. It’s been a good 2 hours since he ate the salmon. This is after the dose of Benadryl an hour ago. Okay don’t panic mom (in my head) we’ll just give him some more Benadryl. So I give him another half dose. He keeps coughing and clearing his throat so I ask him some more questions without suggesting anything. Don’t ever ask direct questions like does your throat feel like it’s closing. Let them describe it to you in their own words if they’re old enough. It’s still gunky and a little tight because it’s gunky. Nathan and I have a quick huddle and decide to give him an albuterol nebulizer treatment. Yes, of course I’m still panicking. That’s what a mom does. Nathan assured me that if it was really bothering him he wouldn’t be sitting there calmly playing a video game. He says this from his MANY experiences. I agreed. So I sat through the nebulizer treatment watching him like a hawk. Things seemed to be improving. His actual respritory system wasn’t effected or we would have immediately given him the epi pen. We did the nebulizer as caution, preventative. As for now he’s okay. I’m thinking though we won’t be trying any other type of fish until a long conversation with the allergist or some testing. I’m not willing to take that risk.
Dear Allergies and EoE,
I HATE YOU.
Traditional beef veggie soup on the right. Charlie special allergy friendly veggie soup on the left. I love the crockpot. It saves me most days. Trying to make, what seems like, 50 different plates of food if i can make Nathan and I dinner in the crockpot thats one less worry. A heck of a lot less dishes too!
The difference between Charlie’s soup and ours is that I put cooked ground pork and veggie broth in his. He also can’t eat the bag of frozen veggies because of the peas. So I chopped carrots, potatoes and added green beans and corn.
Things have become so crazy with the kids I never post about meals anymore. Who knows, maybe that’s the way my blog should go.
Tonight I was determined to do a post on this fantastic black bean soup I was going to make. Here it is.
Black bean soup
I didn’t follow a recipe today. I felt I’ve made this enough times I would just try the dump method.
First things first, get those beans softened. I, of course, forgot I had this planned and didn’t soak my beans overnight so I opted for the quick soak method on the bag.
Make sure you get them soft. I did not. We had hard beans in our soup. Blah.
After you soak your beans drain them and pick out the bad ones.
Put them back in the pot and add a box of broth. I chose vegetable so that Charlie could eat it too.
Allow helpers to help or they pout.
A couple dashes of red pepper flakes for heat.
Turns out my helper just wanted to be in the pictures.
Add a few shakes of cumin.
A few shakes of chili powder.
A can of fire roasted diced tomatoes. I love these things!
I would typically saute my onion and garlic but I was running out of time so I chopped and dumped them in. See the little minced garlic pieces in there?
Add some carrots for color and healthiness. I didn’t have any peppers on hand or they would have been tossed in as well. Put the lid on and let it simmer. Wait! I know, I forgot the meat. I had a ham hock and some ham steak to dice and put in there. I completely forgot.
While it simmers braid some hair.
Play with the baby
After hours of simmering taste it! If it suits you its time to mash it up. You can use a potato masher or let the soup cool a while and use your ninja blender.
I didn’t blend all the soup. Maybe 3/4ths of it. I added this back to the crunchy bean soup in the pot and continued simmering it. I completely forgot to take a picture of a bowl of the finished soup. How could I forget? Well, I have 4 kids. Dinner is the craziest time of day for us. I was also bummed I had forgotten to add the meat and quite upset my beans were hard. I hadn’t realized they were hard until the blending process. Luckily the flavoring of the soup was yummy and was edible. So we topped our crunchy soup with sour cream. Had a slice of ham steak on the side along with a chunk of french baggett.
We have 3 nebulizer machines now, so it will speed things up a bit.
We met our new allergist today. She was not intimidated or shocked to hear our family history. She didn’t even bat an eye. I like her. To my surprise though the boys asthma is out of control right now. Charlie failed the breathing test big time. She said one foot almost in the emergency department door bad. Gage was also bad on the scale but not as bad as Charlie. So we have a new action plan for asthma and new daily inhalers for winter. Tinleigh doesn’t officially meet the allergist until Thursday. The allergist heard her coughing just as bad as Charlie and after explaining Tinleigh just finished a round of oral steroids Tinleigh now has the same daily inhaler. I had to make an appointment with the pediatrician after the allergist for Tinleigh because she was still wheezing. The allergist called the pediatrician and let him know what’s up.She told him Tinleigh needs the same inhaler and asked him to send in a prescription for her. I think the doctors here are going to be a good fit for us. So everyone but Layton, knock on wood, is still on breathing treatments with the addition of inhalers. I am praying this is a good plan that will keep the asthma flares at bay all winter.
The appointment wore me out. Four kids in a small room. It was so hot. Tinleigh and Gage were half-naked by the time it was over. I was trying to cover everything I could remember about the boys. Bringing up all the history of everything they’ve gone through. Just thinking about it made me tired. Then talking about the future and what we have to face made me even more tired. I didn’t think the appointment would take that long since we were the first ones of the day. WRONG. It took 3 hours. There was no wait time either. I had only packed snacks for an hour. So of course they were all starving, hot and cranky by the time we got out of there.
Once we left I had to immediately call the pediatrician to get Tinleigh’s appointment set. Well, I had forgotten I was low on gas that morning. We pulled into the appointment with 3 miles left to go. When we got in the car after the appointment I had forgotten again. So on the phone with the nurse I noticed I had 1 mile until empty. My heart raced because I had no idea where a gas station was. I couldn’t hang up and map one. Luckily I saw one up the road. We had a stop light and traffic to get through though to get there. We pulled in as it flipped to 0. I was so relieved. I had the 4 cranky butts, pouring down rain and was exhausted from the appointment, would not have been a good day to run out of gas.
Now we’re home. Everyone has done yet another round of breathing treatments. Everyone is full. Layton tried carrots for the first time and loved them. I’m just praying everyone heals during the night and no one goes backwards. I’m not ready for an ER visit or hospital stay. We have no action plan for that.
Time to find a sitter/helper/personal nurse
Charlie has an allergy to pumpkins and with pulp contact breaks out in hives. So every year since he was able to help he has had to wear gloves. We have taught him the safety rules he needs to follow so he can join in the fun.
Nathan always takes charge of the pumpkins and does a great job.
This year the boys were really trying to do things on their own.
I hate that they’re actually big enough to do it.
When it came time to get the candles Nathan asked me if we had any. I hadn’t even thought about buying pumpkin candles. While trying to think if I had seen anything we could use while unpacking Tinleigh disappeared. She returned with the most brilliant idea, birthday candles.
I just love her.
So everyone got a birthday candle and we were set!
I painted Laytons pumpkin teal and explained to the kids all about the teal pumpkin project. The boys really thought it was a cool idea.
Before Halloween got here all 4 kids got the respritory cruds. Gage kicked it off with fever and wheezing. Followed by Tinleigh who got it the worst and needed oral steroids.
Charlie’s throat swelled and we thought for sure he had strep. Turned out he didn’t, but his asthma did flare which was a surprise to me.
Layton just got the sniffles. No signs of asthma yet. I will say I’m very nervous about how she’s going to turn out as each of the kids are worse in the order of birth.
On the day of Halloween the boys dressed up for school and had parties. The girls and I joined them at school so I could make sure they did not receive unsafe foods. Having 10 other parents I didn’t know in a classroom passing out food I didn’t feel the boys would get their safe food. The room moms had called me ahead of time to accommodate the boys, but it’s not their responsibility to make sure my kids stay safe. Having food, games and 25 kids to keep in check, I doubt making sure my kids get the correct snack was at the front of their mind. Gage was handed a couple things he couldn’t have. Charlie’s snacks turned out to be a bit different from what was discussed, I’m very glad I went to both parties. After school I brought the kids home to rest a bit. They were way to excited though. I stuffed them all full of formula and food. Those that needed it had a breathing treatment. Then we got dressed and headed downtown to daddy’s office. In our area its more rural and people don’t trick or treat. I had heard the main street in a neighboring town really does it ip so that’s where we went.
It’s been so warm here that we were in shock to have a 48° trick or treat night. The kids all had on layers under their costumes but we were freezing. So we decided we would give it a try and if we got too cold we would head up to the church and just do trunk or treat.
Houses were decorated and the community was really into it. It was fun, but we were still cold. I think we did about 10 houses and decided we were done, but not before Tinleigh wanted her picture taken with this giant spooky tree. She was so nervous to walk up beside it, but grinned so big. It was too cute.
I handed each of the kids a piece of candy when we got in the car and took their buckets. I didn’t see any teal pumpkins but im sure if we would have kept going we would have seen a few.
We drove up to the trunk or treat to finish up our night. The kids had a great time. Tinleigh was in aww at all the candy she had in her bucket. I was surprised and excited to see a packet of cherry kool-aid in her bucket.
Its an elemental safe drink!
Home we went and the boys could not wait to sort their candy.
Nathan had ran to the store since we had separate cars.
The kids and I arrived home, went straight inside and dumped their buckets on the kitchen floor. We sat in a circle and began to sort.
I have the kids sort their candy so they visually know whats safe and what isn’t.
Gage took extra caution at times and used his foot to get rid of things.
I thought we were doing ok. No one was trying to eat anything and everyone was busy. As I’m looking at Gage I smelled a very strong peanut butter smell. I look around and look back to Tinleigh. I realize right in front of me, not 2 feet away, she had an opened mini resse’s cup and it was missing a nibble. OMG Panic flushed over me. I couldn’t think but I was in motion. I ripped off my costume. Grabbed my phone and dialed Nathan then handed the phone to Charlie. I quickly ripped off Tinleigh’s costume. She began to cry. I told her mommy wasn’t mad and everything would be okay. She cried that her mouth hurt and she began to itch her inner ears. This of course made me panic more. Trying to keep my composure I saw nathan pulling in and told the boys to run and get him. Of course they went running and screaming for him. As Nathan was coming in I had the epi pen in my hand and was pulling down her pants. She began coughing. Nathan said ok let’s do this. She was now beginning to vomit so I ironically grabbed a candy bucket for her to puke in. I then held her in a paralyzed position as Nathan shockingly jabbed her with the epi pen. The trick about an epi pen is you dont just jab and your done. You jab and have to hold it there for at least ten seconds so the medicine can drain out. To her surprise she screamed and tried to grab the pen out. I held her hands and tried not to cry as Nathan assured her everything was going to be ok. She continued to vomit up the toxic to her system candy and Nathan held her in his lap as I got her a wash cloth.
I found the candy I had thrown in the sink. She had only taken a nibble.
We know she’s anaphylactic to dairy but nuts are an unknown. She’s never tested positive to nuts. However, now that shes been exposed to nuts it might turn into a whole new game. During all this I could hear Charlie crying in the bedroom and I really have no idea what they were doing in there. Makes me sad though they had to witness their little sister go through this. Before Nathan jabbed her I asked them to leave the room. I didn’t want them to have a visual burnt into their minds.
Tinleigh was/is fine and since she was already on prednisone it worked out to her advantage.
Another Halloween in the books. I really wish it wouldn’t have ended so horribly. I’m trying to teach my kids hands on how to be safe and what to look for. If I would just remove everything that’s not safe how will they ever know for themselves? Food allergies are scary and even the most cautious situations can turn deadly.
A little shout out to Layton who chilled in her car seat happily during this entire candy situation.
We’re starting cold and flu season off right. Monday Gage stayed home with a fever and wheezing. Today Charlie was swabbed for strep and his asthma is acting up.
Tinleigh has been wheezing for 2 days now. She’s having a hard time catching her breath so she got an appointment with the doctor as well.
Poor Layton is sneezing out giant snot balls. That’s one part about being a mom that grosses me out. Snot, boogers and puke, count me out.
Luckily Charlie’s rapid strep came back negative. We’ll know for sure in 2 days when the culture comes back. It’s happened twice with Charlie that the culture comes back positive. Tinleigh is getting a round of steroids. Anyone want to keep her for the week? Tinleigh on steroids is not fun. She’ll get better quicker though, so I can’t complain.
Should be an interesting winter. The school nurse told me yesterday kids are already getting the flu. Like Charlie said as we were leaving the office, we’ll just tough it out.