LIVING

With EoE, Allergies, Asthma and a G-Tube

Time for jack-o-lanterns

DSCF5107First 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. DSCF5075I 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. DSCF5077Next 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. DSCF5080Of 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. DSCF5083I 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. DSCF5086Next 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. DSCF5101Tinleigh was feeding all the goats leaves while the boys were shoving grass through. They have no fear of animals.

friendsWe snapped a quick picture through a cut out.DSCF5105My 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. DSCF5106There 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. DSCN3533This 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. moms 021He 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. 🙂DSCN3535 So a few hours later we had two pumpkins done. DSCN3541Tinleigh’s still isn’t done. DSCN3538I 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.

October 27, 2013 Posted by | LIVING | Leave a comment

Anaphylactic culprit

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.

October 26, 2013 Posted by | LIVING | Leave a comment

Tinleigh is two!

Tinleigh turned two this month! DSCN3427I’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. DSCN3439Just 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. DSCN3445The 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. DSCN3457Right 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. DSCN3523We 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! DSCN3525At 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. DSCN3542She 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. DSCN3546

Charlie age one

Charlie age one

HAPPY SECOND BIRTHDAY TINLEIGH!! DSCN3436

October 26, 2013 Posted by | LIVING | 3 Comments

Baby vs epi pen jr.

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. DSCN3485

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.

DSCN3512

There are no hospital pictures because I forgot my phone. Which, the camera phone is broken anyways because I dropped it in the toilet. I’ve had to go back to the olden ways of using my Nikon all the time again.

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. DSCN3513

October 14, 2013 Posted by | LIVING | Leave a comment

An allergy mom’s day

Get up – non-school day

Get Tinleigh out of bed. Change her and get her dressed.

Make coffee

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

Pour coffee

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)

mom called

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)

sort of blurry but you can see they're swollen

sort of blurry but you can see they’re swollen

Got kids set up with play-doh. DSCN3483

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

Boys are still playing play-dohDSCN3488

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 Gage and Tinleigh each their own batch of pancakesDSCN3491

Gage’s turned out perfectDSCN3493

I managed to mess up something in Tinleigh’s 😦DSCN3494

Made a new EoE mom friend on FB

Fed RonDSCN3495

Fed Ron’s crickets

Gave Tinleigh a pancake, an orange and some neocate jr chocolate in her tiny bottleDSCN3498

Gage chowed down two pancakes.

Cleaned more play-doh up – we’re going on 6 hours now. They literally have only left the table for more cars, animals or to use the restroom. DSCN3489

Made a pitcher of iced tea

Thought about a snack

Checked on Tinleigh

Ate a greek yogurt

Cleaned the kitchen again, emptied dishwasherDSCN3492

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.

8:00pm

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

Ate dinner

Scrolled through pinterest

Unhooked Gage and put the boys to  bed

Finished up the dishes

9:00pm

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.

October 11, 2013 Posted by | LIVING | 1 Comment

A baby eating fish?

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. DSCN3471Nothing 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. ??? DSCN3472After 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. DSCN3473I 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.

Yes, she's two and drinking out of a tiny bottle. In that bottle though is her elemental formula which she refuses out of cups. You would do it to. Don't judge. I recently found out she's not the only one or oldest one that will only drink it out of a bottle.

Yes, she’s two and drinking out of a tiny bottle. In that bottle though is her elemental formula which she refuses out of cups. You would do it too. Don’t judge. I recently found out she’s not the only EoE kid or the oldest one that will only drink it out of a bottle. That’s a post for a different day.

YAY FISH!!!

for now.

October 10, 2013 Posted by | LIVING | 2 Comments

Something’s fishy

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.

We attempted a triple scope day this summer. Couldn’t have gone better. 20130815_142150The results of that day is where we are now.

20130815_160458

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.IMG_20130930_105929

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.IMG_20130924_165944

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.DSCN3424

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.

October 8, 2013 Posted by | Charlie's allergies, Gage's allergies, LIVING, Tinleigh's allergies | , , , , , | 3 Comments

   

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