First we needed pumpkins. So we headed to a local pumpkin farm recommended by a neighbor. Upon arriving the first thing you could see were goats, high up on silos. I knew right then we were definitely in the right place. Since we’re southern and living in NY I was not expecting to be blown away by a pumpkin patch. It was quite interesting. They had little goat ramps from the ground up to the top of the silo. They then had a “goat-walk” all the way around the top of the silo. There were a few platforms at the top where goats could stand and you could feed them. You purchase a cup of food then stick it on a pulley system and send it up to the goat! I was impressed. Next up were some very simple rain gutters cut in half and set up on a downward slope. At the top was a water pump. The object was to pump the water as fast as you could sending a rubber duck sliding down the gutter. Whoever made it to the end first won. I think my boys could have done this all day.
Yes, I am pregnant. Of course they had a huge rope maze. If you look in the distance you will see Tinleigh running like a wild woman. Just short enough to run under the ropes. They did have a huge corn maze but by the time we got to it Tinleigh was DONE for the day. Gage was pretty tired too. Charlie begged but I knew it would be a disaster. I thought this was cool. It’s called a jumping pillow. It looked as if it came right out of the ground. No sides on it. Wish I would have gotten a better picture so you could see how big it was. It was designed in Scandinavia over 15 years ago. The boys helped Tinleigh to the top. It too a bit of coaxing to get Gage up there. We had forgotten his Benik belt which he wears to protect his button. I assured him no one was going to tackle him and he would be fine. He ended up loving it. Charlie stayed right with Tinleigh the entire time. He’s so protective, I love it. Next we did some go carts and a giant cargo net and slide. Then we met back up with the goats. The kids quickly learned the goats would eat anything they shoved through the fence. It was on. Tinleigh was feeding all the goats leaves while the boys were shoving grass through. They have no fear of animals.
We snapped a quick picture through a cut out.My mom went with us. She got to enjoy the train ride since my belly was too big to fit. We didn’t feel safe just strapping Tinleigh in there and sending her on her way. Charlie’s cart had a horn. Big mistake putting him in that one. There were other things like swings and things to climb on. We saw some other farm animals and a magician.
Nathan has always been the pumpkin carver. A few days after bringing the pumpkins home it was time to carve them. The boys picked what they wanted and Nathan went to work. This was the first year we had an issue with Charlie being allergic. He was determined to constantly touch the pumpkins. We had rubber gloves on him but he wasn’t as cautious as he has been in years past. He just didn’t care. We had to explain to him it’s not safe for him to touch it. He was just being a stubborn 7-year-old. Gage explained to Charlie that it’s not safe for him to touch eggs but Charlie can touch eggs. Then how Gage can touch pumpkin but Charlie can’t. They’ve caught on to how I try to make everything even out. 🙂 So a few hours later we had two pumpkins done. Tinleigh’s still isn’t done. I might just throw some glitter on it.
Just another holiday tradition we made it through with no allergy attacks! Luckily in the animal barn they had a sink for hand washing. I imagine if that wouldn’t have been there we would have had some swollen eyes from touching the animals then rubbing their eyes. Never fails.
We found out why Tinleigh had the anaphylactic reaction. The frozen fruit bars she had were a store brand. The store has chosen not to list cross-contaminates on the box. These bars were made on the same equipment that handles dairy.
Almost makes me scared to feed her anything that doesn’t grow out of the ground.
Companies are required to list if the food contains an allergen. It’s up to them if they want to list “may contain” or “made in a facility with”. Seems stupid to me to not list those things, why risk it? They could have killed my two-year old.
Tinleigh turned two this month! I’m not going to say she’s the ruler of the roost but she definitely takes charge of the room. She’s very spunky and full of talk. Just the five of us celebrated. All we did was had her open presents. I wasn’t up to making three different cakes so everyone could have some. I explained to the boys she’s little and doesn’t know a birthday comes with cake. I told them she would be happy with just her presents. So that’s what we did. The little girl in her is really starting to show. She’s very motherly and loves to be pretty. It’s amazing how different little girls are than boys. Right now TInleigh is somewhat healthy. We have our days as any allergy kid does. We’ve corrected her meds and she’s drinking a lot of elemental formula now. Well, that’s her main source of nutrition. I wouldn’t say she’s drinking enough. We have stopped fish for a few weeks and started potato. We will reintroduce fish again in another week. Surprisingly she’s not a fan of regular potato chips but will eat a few fries. Mashed potatoes, forget it. I will take those french fry calories if that’s all she likes! At her two-year appointment we learned she’s definitely on the petite side. Her weight is ok. All I can do is keep offering her what she’s allowed and hope she gets enough. She is starting to develop some eczema on her chin. Could just be the cold dry air. She’s never had an issue with it yet. So hopefully it doesn’t get as bad as what Charlie had as a baby and toddler.
We finally used an epi pen jr.
Since last Tuesday Tinleigh has had us up in arms about her well being.
She woke up Tuesday morning with a red bumpy rash around her mouth. I blamed the pacifier right away. She only gets her pacifier in bed so I was hoping by the end of the day it would be gone. Not the case. That night at bedtime I put some cortisone cream around her mouth.
Wednesday she woke up and the rash was worse. So again i applied more cortisone and scrubbed her gah (paci). That day we also trailed her on fish for the first time. It seemed to go well.
Thursday the rash had spread more starting to go up her cheeks. I knew it wasn’t the fish but what in the world was it? I scrubbed her gah (paci) really good again. Once again we did another fist trial. This time she did have a slight cough about an hour into it but it just seemed a little flemy and nothing else happened. So we were on the fence about the fish. We also started her on omeprazole this day.
Friday she woke up with a bit of a dry cough. Her eyes were swollen and they were very red below. I was now concerned. It takes a lot to get me concerned at this phase of the game. We’ve dealt with a lot. Is it the fish? Is it the omeprazole? Is it her sinuses? We skipped the fish on friday. I called the allergist and she said try the fish again Saturday. We continued the omeprazole. I gave her benadryl once during the day to see if it would help her eyes. It didn’t.
Saturday she woke up with the dry cough upon waking. Her eyes were still swollen and now her face seemed swollen. We did let her have some fish. She only ate a few bites. She also had her omeprazole. Still no sign of a sinuses being stuffy and no cough while she was up and at it. So I did a bing search and found that facial swelling can be a reaction of the omeprazole. We decided Saturday would be her last dose of that. I had also given her a fruit bar popsicle I bought at Trader Joes. It was super messy and she loved it. (This comes back to haunt us)
Sunday she woke up and the rash was now only on her cheeks. Her facial swelling seemed down but her eyes still had that swollen tired look. We didn’t give her fish or the omeprazole. That afternoon she did have another fruit bar popsicle. After eating it I wiped her down and put her shirt back on her. She came over to help me load the dishwasher immediately after she was done. I noticed she was digging at her neck. I wiped her off again and noticed she was getting blotchy on her chest. So I grabbed the benadryl and gave her some. I then pulled her clothes off to throw her in the tub to scrub her clean. Her entire belly was welting up. Right before my eyes I watched it climb up her neck onto her cheek and ears. She then coughed a super flemy cough and dry heaved. She was itching like crazy and coughing. Nathan just grabbed the epi pen as I positioned Tinleigh on my lap in the middle of the kitchen floor. We told Gage to leave the room and Nathan jabbed her little thigh. After the 10 seconds Nathan pulled the needle away. I lost it a bit, it was like a smack of reality. He changed her poopy diaper and I ran to the restroom, grabbed my purse and out the door we headed to the ER. I of course forgot my phone. We arrived at the ER a short ride later and she was much better. We checked in and went right to a room. They basically kept an eye on her for an hour and gave her a dose of prednisolone. During our stay there Tineligh was like a light switch. She was either perfectly content and happy or a raging baby. I guess the adrenaline from the epi pen didn’t agree with her well. At one point she had thrown her spoon on the floor and I threw it away. Before I could ask for another one she made her way in a rage for the trash can. I scooped her up and she latched down on my shoulder with her tiny buck teeth and drew blood. I couldn’t believe it. I showed her and told her we don’t bite. It broke her heart she gave me a boo boo. She cried and cried. It was like a baby roller coaster of emotions.
Once we got home she was starving. So I gave her a safe baby pouch of food. She instantly became gunky and coughing. I was starting to really freak out at this point. I was so worried the omeprazole had thrown her into some over active allergic reaction. So we gave her a pack of smarties and waited a little while until the cough seemed to stop then put her to bed with a big bottle of elemental formula. She coughed and coughed when we put her in bed. I was silently freaking out. She eventually fell asleep after maybe 15 minutes. She was worn out.
That brings us to today. She didn’t cough all night but woke up coughing and gagging horribly. Eyes still red but the swelling had gone down to almost nothing. I listened to her chest and she was very tight and wheezing. She had a breathing treatment. So now I’m wondering does she have bronchitis? Is this all related to a virus building up? I called the allergist to get her opinion and she said come in she will see us whenever we can get there. We arrived and I went through everything since last Tuesday. Here’s what we’ve come up with.
Stop the fish and omeprazole until this virus thing clears.
Find out if she’s ever had omeprazole before. Honestly we’ve gone through so much since moving I couldn’t remember what she’s had before.
The rash was probably the start of this virus.
Call the maker of the Popsicle and find out what else is processed in their facility that they didn’t list on the box. She either has a new allergy or got some unlisted cross-contamination.
The swelling of the eyes and face we’re not 100%. If she’s had omeprazole before then yes it could have been a reaction to it. If not then it might be from the virus.
Once the virus clears we can do fish again and see if she becomes gunky while eating it. If so then fish is done. If not then we keep going and after a week of that we can also try sweet and white potato. If she does react to the fish then we just move onto potatoes.
I called her old pediatrician in MO and found out that yes, last June Tinleigh had omeprazole. So I relayed that to the allergist and we will probably switch to lansoprazole. We have to get her on something though to get those bottom esophagus eosiniophils cleared up.
For today and tomorrow she has to continue the prednisolone because there is the chance of basically they call it a relapse of the allergy attack. So if you call me and hear a raging baby in the background it’s OK, it’s just Tinleigh. I will be wearing my suit of armor for the next three days as well to protect myself from my little piranha.
Get up – non-school day
Get Tinleigh out of bed. Change her and get her dressed.
Make her elemental bottle
Get Gage’s formula made and get him hooked up
Make Charlie some breakfast
Start thinking about dinner
start thinking about finding a recipe to bake for Tinleigh today
Decide to do THIS blog today
Scan fridge in hopes of getting a spark for dinner.
Decide to clean out a few things that are too old to be eaten
Tried to google a ground pork and ramon noodle recipe for Charlie. He only recently got to try pork ramon noodles and loves them. So I’m thinking his dinner will be some ground pork tossed in and done. Maybe I’ll toss in a few veggies as well. One dinner planned!
Nathan and I will have beef and noodles. mmmmm Two dinners done!
Ok onto Tinleigh.
Oh maybe there’s a hippy food store nearby that has millet in the grain form and I can make her “oatmeal”. That’s what we use to call it for Gage. hmmm more googling. (hippy is not a word in my word press dictionary lol)
Found a Trader Joes. It’s a 30 min drive though. Maybe tomorrow if the boys go fishing T and I will head that way. If not then today it is! Texting Nathan
Still need a recipe to make her something, she isn’t drinking her formula this morning.
Made Charlie more breakfast
pour more coffee
Tinleigh isn’t drinking her elemental this morning. Grrrrrrrrr Time for some squeeze pouches. Hey Plum, Sprout and Gerber want to send me some Tinleigh safe samples, there’s only two or three of each brand she can have!!!! Or lower your prices please.
Noticed Tinleighs eyes are swollen and red underneath. Called Nathan. Called allergist. Called friend. Posted on EoE fb page asking could it be fish. Waiting on allergist to call back. Went ahead and gave her Benadryl. (this killed an hour)
Tinleigh pooped normal!! YAY
I put some clothes on. Should probably eat something it’s almost noon.
Time for some lunch for Tinleigh and down for nap. She’s yawning from the Benadryl.
Tinleigh down for nap with formula
Allergist called – try fish again tomorrow. Eyes more than likely not related.
Ran back upstairs and gave Tinleigh her slurry meds. Almost asleep and didn’t drink any of her formula.
12:45pm Made Charlie grilled cheese and sliced up a giant apple. Gage isn’t hungry and it’s not time to hook him up. I warmed up some leftover pizza for myself. Time to rest this baby making body for a little bit.
2-1/2 hours after starting the boys are still doing play-doh. I love that stuff
Gage got hungry and had one of his rice flour cinnamon sugar pancakes and black olives
cleaned the kitchen and got the beef shredded
Gage wants more pancakes
Tinleigh woke up
Gave her a couple popsicles
I cleaned up a bit under their table
Called insurance company
Changed Tinleigh’s diaper
Got the noodles into the beef with the rest of the ingredients
Crap forgot to get out the ground pork for Charlie’s dinner
Thought – need to feed Ron the lizard
Made a new EoE mom friend on FB
Fed Ron’s crickets
Gage chowed down two pancakes.
Made a pitcher of iced tea
Thought about a snack
Checked on Tinleigh
Ate a greek yogurt
Got Gage an orange
Kept cleaning kitchen
Neighbor boys knocked on the door. After 6-1/2 hours the play-doh came to an end
Hey Play-doh – if you need a couple of test subjects for new product I’ve got your men!!!
I cleaned up the remaining play-doh after the boys were done cleaning
Cleaned up Tinleigh’s dinner
Started making Charlie’s dinner
Crap pork smelled sour
Quick think!! What else can he have
Sliced tomatoes and black olives
Handed Tinleigh more formula
Sat the rest of Gage’s pancake and orange in front of him
6:30 Nathan gets home
Gave Tinleigh more formula – it’s a 2oz bottle
Had my 50th debate with Charlie that snipes aren’t real, they don’t feed on apple cores, they don’t change color like a chameleon and they aren’t out during the day. Lastly, salt water does not kill them.
Took Tinleigh outside
Brought Tinleigh in
Sat and talked to Nathan for 15 min while he let her have POP!
Threw TInleigh in the tub then in bed with her formula bottle
Nathan started making our potatoes for our dinner
Threw Gage in the shower
Sent Charlie to the shower
Got Gage hooked up and gave him a snack of Rice Dream ice cream.
Checked on Charlie
Gave Tinleigh her slurry after drinking her bottle
Hooked Gage up for a breathing treatment
Made Charlie a bowl of ice cream
Got my dinner plate
Scrolled through pinterest
Unhooked Gage and put the boys to bed
Finished up the dishes
That was my day.
I’ll sit, relax and watch tv for a few hours then crash.
Yes I did type this throughout the entire day not to miss anything. When does she clean you may ask. I clean while the boys are at school. That’s when I also run errands. It was a very typical day for us with all kids home, aside from the play-doh marathon. Usually the boys would be outside playing. No major allergy attacks. My heart did skip a beat when Gage yelled “Tinleigh ate some play-doh!!!” She was fine though. Play-doh contains wheat. She didn’t like it thankfully. Do you eat dinner that late every night? Yes, typically it’s after all kids are in bed.
I will sleep like a baby tonight.
We have officially trialed Tinleigh on fish. She has passed. However, my gut tells me otherwise.
I told Nathan he had to be home on time last night so we could do the trial. I baked Tinleigh some tilapia, same as i did with the boys trial. In the mean time I was also frying up some breaded tilapia for Charlie. Nathan arrived home shortly before 6. We went right to work on the trial as soon as the fish was out of the oven.
DO NOT EVER TRY THIS AT HOME UNLESS YOU HAVE DONE AN IN OFFICE TRIAL WITH YOU ALLERGIST. YOU MUST ALSO HAVE PERMISSION FROM YOUR ALLERGISTSTO DO A TRIAL AT HOME. DOING A TRIAL AT HOME MAY RESULT IN DEATH. HARSH, BUT VERY TRUE.
First we rubbed a giant square of fish on Tinleighs back and set the timer for 15 minutes. Nothing happened, so we moved on. Next we rubbed some fish on her lips. She was very confused as to what was going on. She couldn’t figure out why we had told her she could try some fish and all we’re doing is rubbing it all over her. During these last 15 minutes Nathan did have a reaction. He was so snotty and sneezing just from the fish being fried and baked in the kitchen. He was a complete mess and had to take benadryl while I aired out the kitchen. How will this ever work, the kids eating fish and Nathan having airborne reactions. ??? After another 15 minutes and no sign of a reaction we proceeded to let her try a tiny bite. Her first reaction was “Mmmmmmm”. Thank goodness. I was afraid she wouldn’t even want to eat it. Nathan sat right with her and had a tea party during this entire process and watched her very closely. I have never been so nervous. I was glad he chose to sit with her. I probably would have went crazy sitting there staring at her. Luckily, I had the boys dinner and homework to keep me occupied. We continued giving her larger pieces every 15 minutes until it was an hour before her bedtime. It went well. Nothing happened. So, it would be considered a pass. There’s just something about feeding your very allergic two-year old fish that doesn’t sit easy with me. So I decided to do another challenge the next day.
That brings us to this morning. After I dropped the boys off at school we came home and threw a filet in the oven. While it baked I went ahead and fed her a small breakfast. Fish came out, we began.
I didn’t do the rub on the skin or lips but did start off with a small bite and we worked our way up to finishing the entire filet. It took us an hour and a half to eat the entire thing. At one point I thought she was getting gunky. However, it didn’t get worse and nothing else happened. When she eats apples or chicken, which she tests positive to, she also gets gunky. Still with an uneasy feeling about fish we have decided we’ll let her try fish again in a few days and see what happens. Our other option is to just stop the fish and go for potatoes. Which would be a huge addition because there are so many options with potatoes. However, fish is so healthy for her. Something has to work.
It’s been a great summer. The only epi pens used were on Nathan. That’s just stubborn him going out to lunch where he probably shouldn’t.
Charlie was clear. We had removed chicken from his diet. That did the trick. So his only meat was pork. We decided to give fish a try. He had never had it and went both ways on allergy testing for it. After a four-hour food challenge at the allergist’s office we are happy to announce Charlie is trialing fish! He LOVES Gorton’s fish sticks. I love how easy they are.
Gage’s scope results from that day were wonderful as well. Gage is now up to seven foods: blueberries, rice, strawberries,lemon, cocoa, tapioca and green beans. We really wanted to add a protein to Gage’s diet. The only thing we had left was fish. So after a negative blood test he did the same four-hour fish challenge at the allergist’s office. Let’s briefly touch on what happens at a challenge with such a highly allergic food. I bring the fish of choice ready to go. They first do a skin prick test with the fish that I bring in. Next they rub fish on his lips and leave it sit for 15 min. In the mean time I’m sitting there watching him like a hawk making sure there are no hives, coughs, itches or anything that looks like a reaction. They then have him try to hold a little piece in his mouth for 15 minutes. After that, they give him bites to eat every 15 minutes. Each bite increases in size double of the previous bite. Each bigger bite results in my nerves climbing through the roof wondering “is this the bite that will set him off into a reaction?” It’s very exciting each time we hear the timer go off, no sign of a reaction and they come in with another bite. Very exciting for a little guy who loves to go fishing but has never had the pleasure of tasting it. The mom side of this is absolutely nerve-wracking. Imagine feeding your child something you have done your best for the last 5 years to keep away from him. Lots of praying went on in that room. There were no tears allowed. It was Gage’s exciting day, this mom wasn’t going to ruin it for him. I’m not sure how I made it through that day, or Charlie’s. I did though, and so did they. Now they both get to eat fish. Gage doesn’t get to enjoy the Gorton’s fish sticks. However, I have found a wonderful rice flour based tempura I can use to make him fish nuggets. He loves them. I love that he loves them.
The results of that scope for Tinleigh were horrible. On the highest dose of steroids she was still very inflamed and with high eosinophil counts. So we removed the last of the grains and meats which were rice, oats and pork. Our hopes were to get her to drink more elemental formula. The pressure was on. I managed to start getting 26-28 oz a day down her. Which was great because with not much left for her to eat I couldn’t figure out what to feed her. Then she caught a cold and started throwing her cups of formula back at me saying YUCK!! Now she will only drink the unflavored mixed with some coconut milk in her bed in a bottle. Don’t worry, we’ve seen the dentist and her teeth are fine. We recently had her scoped again. Results were confusing, she had less than one in the mid and upper esophagus. Her lower esophagus was actually worse than last time, more than 50. WHAT?? How is that? We’re hoping that its reflux. Although that’s a high number for reflux. So we are starting her on a reflux med and will scope her in 8 weeks. We are also going to do a fish trial on her. Since she’s stopped drinking as much formula we need to get something else into her. Do I agree with this plan? Not 100% I don’t like her on the steroid, all we’re doing is masking anything that may still be effecting her from her diet. I hate adding foods when on steroids. Again, the steroid just masks problems. However, she doesn’t have enough food to thrive. She’s two, she has to grow. I did manage to help her gain some weight while I was getting her to drink the formula. In my perfect world we would add the reflux med, stop the steroid and re-scope in 8 weeks. That wold be the real truth of what’s going on with her.
So my kids are now eating fish, Tinleigh will trial it tomorrow. Who would have thought I would ever be preparing fish for these three? I’m so happy that its working out. I just hope and pray the scopes in December are still good.