LIVING

With EoE, Allergies, Asthma and a G-Tube

We’re EATING!

It is awesome that Gage and Tinleigh are eating now. As of today Gage has added apple, buckwheat, corn, pickles / cucumber, VeganEgg, squash and oats. Tinleigh is up to banana, corn, squash, potato and pear. Tinleigh tried pickle and coconut but had a reaction to both. When she tried pickle her bottom lip swelled up and with coconut her throat felt funny she told us.

PicsArt_03-13-09.45.23What I completely forgot about was how hard it is to cook for all the people! I try to make fun things for them to eat so they get the full spectrum of foods with what little they have. I’ll tell you what though, it’s tough. Every recipe is 50 different ingredients. The dishes pile high and then it feels like you’re starting all over again.

I have successfully made Gage some buckwheat cornbread. Just to see the smile on his face when he eats it defiantly makes it all worth  the while. He’s also had buckwheat pancakes and buckwheat apple cinnamon muffins. I think he’s in heaven . I tried to make Tinleigh some banana coconut muffins but those bothered her throat. She’s loving corn and we had totally forgotten about corn pasta! Huge hurrah for that. She keeps telling me she is just having the best days of her life because she can eat different foods. Makes my heart smile and break all at the same time.

I’ve found them dried fruits to snack on along with safe fruit leather. Gage can eat crackers and they both have noodles now. It’s all so exciting to them. Potato chips, corn chips and popcorn! Things every kid should be able to enjoy.

20170313_131333On the new news front we had Layton’s allergies tested. She was so cooperative and brave. Poor thing had no idea she was about to be pricked 50 times. She didn’t even cry out. She did hit me twice when it was done though and that’s okay. Lucky for her only 3 things showed up; clam, oyster and flounder. She’s eaten fish sticks and snuck some of Charlie’s shrimp before but never had a reaction. Her testing was so small they said just use caution. Well I don’t think she’s a huge oyster fan so I doubt we’ll have any trouble telling her no. We still plan to scope her in April and see if anything is going on in there.

Tinleigh had a huge reaction to playing with play dough so that’s completely out now. She’s had smaller reactions here and there. Sometimes even played with it and didn’t have a reaction at all. This last one really got her so I told her no more. She wishes play dough was never created.

Tinleigh’s airborne reactions seem to be under control. She did have some freak eye incident a few days ago. Her eyes just swelled up. I have no idea why. We threw her in the shower and gave her some Benadryl and she cleared up. You never know who’s going to react to what here.

What I’m most excited about soon is spring break. We LOVE the beach and the beach loves us. It will be even more awesome that this year we can actually go out to eat. We never do because it’s just too hard to eat in front of them. This year I can pack them food and everyone will get to eat together!

March 13, 2017 Posted by | Gage's allergies, Layton's food exploration, LIVING | , , , , , , , , , , , , | 1 Comment

Tinleigh’s Complicated

In December the decision was made to remove Tinleigh’s 3 safe foods and scope her to make sure she’s clear when only on the formula. Turns out, she wasn’t clear. In fact, she was worse with no foods than she was at her last scope. Her previous scope with her 3 foods was zero in her mid and 20 in her lower esophagus.  This scope she was 7 in her mid and 30 in her lower. 

tinleighWe know it’s not reflux. Her numbers were even lower when she trialed watermelon 6 months ago. Then they spiked up, then back down and now up again.

Our GI spoke with other doctors and aside from saying “good luck with that one” we are now wondering if Tinleigh is an even rarer bird. Is rarer a word? Tinleigh’s been having airborne reactions. Could those be part of this problem? What if it’s environmental allergies causing her eosinophil counts to stay high? We can’t put her in a bubble.

Our game plan is to test Tinleigh’s environmental allergies and see where that gets us. She’s only ever tested positive to a few environmental things but that was in New York. She hasn’t had those tested since moving here. Is Tinleigh allergic to our new state? Wouldn’t that be just awesome, did you catch the sarcasm there. Will our doctor prescribe a new state for us?

Before we dive into trying to figure out Tinleigh though we’re going to give Tinleigh the same break we’re giving Gage. Tinleigh is going on the same swallowed steroid twice a day. Each week we’ll let her have one need food. As long as she’s not showing symptoms we’ll keep going. She’ll be scoped around the end of April to make sure her dosage amount works for her. She will get to do this for a year or two. Then we’ll go back to figuring her out. So far she’s had squash and all of it’s varieties. This week we’re working on potatoes. She will tell you French fries are amazing. 20170222_224546

I’m really going to enjoy this time with her of letting her eat. It’s almost like introducing food to a baby for the first time, except, it’s a very expressive talkative baby that has a million things to say about the food. 20170219_103708

February 23, 2017 Posted by | LIVING | , , , , , | 1 Comment

Helping hands

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

She didn’t need to call me.

She could have ignored the whole situation.

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

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

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

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

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

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

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

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

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

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

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

Scopes x4

We scheduled all four kids to be scoped on the same day. Our crew filled the 4 spots the hospital would do that day.

The night before we made the 3 hour drive to the hotel. We set up a formula bar.camera 081Fed everyone a snack and attempted to settle in for the night. IMG_0724Layton luckily went right to sleep in her pack’n’play. Tinleigh slept with mom and I. Nathan and the boys took the pull out couch. I think Nathan got the short end of the stick as I noticed Gage basically slept on top of him all night.

We had to get up bright and early. I tried to keep track of the times things happened and do a blog post that way, it ended up too crazy for me to keep going back to log things in.

Here’s as far as I got

4:30am up and at em
4:37 i put my makeup on by the light of the microwavecamera 090
4:45 mom broke her diamond necklace in the dark hotel room and the diamond flew off
5:00 woke up kids
5:15 found missing diamond
5:30 headed to hospital
5:50 checked in all 4 kidscamera 099
6:20 got called back to our roomphoto 2
7:15 Layton got loopy medscamera 098
7:35 Layton went back
8:05 Tinleigh got loopy meds
8:10 Laytons done
Tinleigh went back
Gage got meds
9:07 Gage went back

After this I wasn’t able to keep a log. Once Gage went back Layton came out. Mom and I headed down to be with her and could hear her yelling as we rounded the corner. I knew I had another little Tinleigh on my hands. We walked into her curtain area where one of the nurses was trying to hold her as she screamed and tried to wiggle away. She was fired up. I noticed something in her mouth. I quickly asked what it was. The nurse said a goldfish cracker. WHAT?! I said don’t those have dairy in them? I don’t usually buy them because my other kids are allergic to them. The nurse looked at me and said no it’s just wheat. We scooped the cracker out of her mouth anyways, they handed her to me and then they all left. I grabbed the bag of crackers and sure enough there’s milk in the crackers. I looked down at Layton and right there around her ankle is her little allergy bracelet with one work on it: MILK. I was pissed and nervous all at the same time. I was trying to calm her down, watch for any signs of a reaction and trying to figure out in my head how to handle this situation with the nurses. Her regular nurse came in and I told her in a calm manner the crackers do have milk in them. I then told her if this would have been Tinleigh she would be having an anaphylactic reaction. The nurse went and said something to the pacu nurses about their mistake. I left it at that. Luckily Layton was fine. I called the patient advocate line the next day and took care of the situation. photo 5I then asked the nurse for a glucose bottle for Layton in hopes it would calm her. That’s what always worked for Tinleigh. Sure enough it worked for Layton as well. Layton didn’t like the heart monitors, her IV or the blood pressure cuff. She just wanted it all off. So we keep giving her little bottles of water and turned on the tv. I was able to keep her a little more calm until it was time to unhook her from everything. Once she was finally calm Tinleigh came rolling into our recovery bay. photo 4Tinleigh has a history of waking up crazy mad. The doctor now gives her a little something to calm her down. It works like a charm. She woke up happy and mellow this time. She saw Layton’s little bottle and instantly wanted one too. She may be 3-1/2 but if it keeps her happy then so be it. We entertained the girls for a while and then Gage came out. photo 3We propped him up in a chair and he was quiet and content. Didn’t want bothered only wanted some sprite. Layton was starting to want to run around by this point. So we found a wagon and took the girls for rides up and down the hall. It was still early in the morning and we were the only ones in the whole recovery area. photo 1(1)Finally Charlie came out. We propped him up in a chair as well.camera 171They boys sat drinking sprite and watching tv.  No one got sick. No one threw a fit, except Layton. It was a good day for scopes. The doctor came and spoke to us once everyone was done. Everything appeared good in each of them. Tinleigh had one little spot that looked like small ulcer so they biopsied it. Other than that all the inflammation was down. We know not to get our hopes up because that doesn’t always mean they’re eosinophil clear but it is a good sign that things could be better. We left the hospital by 12:30. We were all exhausted but it was over, we did it.

Friday afternoon I got a call from the doctor. Results were in. I felt numb. She asked who I wanted first. Layton of course! Guess what Layton scoped clear! She may also start on dairy. I couldn’t believe my ears. I think I’m still in shock. Does this mean she’s cleared for life? No, not really. She is on all food at this point in time and is scoping clear. It could flare in the future. We’ll pray that she doesn’t. Charlie was 4 before he started having issues and he was on a regular diet until that point. Let’s think positive though. IMG_0737Next up were Charlie’s results. He was clear all the way through. There were no more eosinophils in his belly either. We had removed soy and started him on reflux medication. The eosionphils in his lower esophagus were gone also. So we will keep him on the meds and off of soy going forward. Even though he doesn’t show any allergic reactions to soy his skin and blood test for soy are huge. So in this case allergy testing does work for him trying to figure out EoE. Charlie is going to trial beef next. He hasn’t had beef since he was 4 and that was the food that set everything into action for him as far as allergies and EoE go. He can only eat pork and fish right now and really needs another protein. Chicken is a trigger and he keeps testing positive to shellfish so beef it is. Fingers crossed he doesn’t have an allergic reaction. camera 039

Gage’s scope was better. All of his inflammation and furrowing were gone. So the removal of corn helped clear things up. However, he was still showing 10/12 eosinophils in some areas. Gage has always had a lower number of eosiophils since having a feeding tube. The highest it’s ever been though is a 9. We don’t want to see these numbers in a steady climb. Cauliflower was the only thing he was trialing. I mentioned to our doctor he has been complaining of his throat burning. So we are going to let Gage keep cauliflower and start him on reflux meds. We are hoping maybe he has some reflux going on and this is why he’s showing low numbers of eosinophils. We will let him take the meds for 2 weeks before letting him start a new trial. His new trial will be broccoli and watermelon. We will scope him at the end of July. photo 1

Tinleigh failed her food trial this time around. Although she didn’t have any visual signs of EoE her numbers were 10/20. So we have to remove bananas and squash from her diet. The doctor is letting Tinleigh keep Enjoy Life Chocolate chips because they are just cocoa. We are going to pull these 2 foods from her diet for two weeks then she will trial oranges and sweet potatoes. Tinleigh will get scoped at the same time as Gage.

For both Tinleigh and Gage if they have high numbers at their next scope we will have to dial things back and get them to a clear scope before we can continue to move forwards. So i’m really praying things straighten out for them these next two months.

We’re very happy with how things are going for the kids.  A little sad Tinleigh has to take away bananas and squash but she still gets to move forward. It’s all just part of how crazy this disease is.

May 30, 2015 Posted by | LIVING | , , , , , , , , , , , , , , , | 1 Comment

6 Weeks

The last few days have been ok. Gage has asked for popcorn, chips and a few other corn items. I remind him that he can’t have corn anymore. He says okay can I have… and asks for something else. He doesn’t complain. It’s just matter of fact and that’s it. He has asked why corn messed him up and we talk about it. He hasn’t complained or thrown any fits. Tinleigh has also asked for food. We offer her blueberries, olives, Popsicles, candy or to make her snow. Of course she’s sick of all of those things and says no. So we try and distract her by suggesting she play something. It’s going to be a very long 6 weeks.

We’re on day 3.

I feel horribly for them.

I can’t imagine being in their shoes. wpid-20150118_103535.jpg

So, that’s just what I’m going to do, walk in their shoes.

I am going to limit my diet down to just a few foods for the next 6 weeks.

NO cheat days.

NO “just one nibble won’t hurt.”

So here’s my list of foods I CAN eat:

chicken

spinach

yogurt

banana

blueberries

oatmeal

raisins

eggs

green beans

cucumber

peppers

flour tortilla

Cliff bars

Starting tomorrow I will only eat these foods for the next 6 weeks.

I’m hoping to get insight on how my kids might feel mentally about food. How it affects them socially. Just get an overall sense of how it is for them.

Anyone want to join me?

Follow along to see how I’m doing.

Sponsor my 6 weeks by donating to CURED and help my kids get the cure they need.

Help cure them so they can eat more than just a few foods.

Make sure and write in Honor of the Root family when you make your donation. karas camera 1314

January 18, 2015 Posted by | daily life | , , , , , | Leave a comment

Two year tubie anniversary

karas camera 053Two 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%.karas camera 770He 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.karas camera 1070He’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. karas camera 286 karas camera 269Gage 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. karas camera 146 karas camera 145It 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.karas camera 445Another 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. karas camera 344Overall 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. karas camera 1276Gage played on the beach karas camera 1274Had a shaving cream fightkaras camera 1266Swam in a lakekaras camera 040Had a bonfirekaras camera 136Flew on a planekaras camera 197Swam at the local poolkaras camera 113Exploredkaras camera 034He even got to go out to eat!karas camera 199He went trick-or-treating

karas camera 1183He traded in his candy for a new toykaras camera 1181He is LIVING!!

karas camera 347These 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.

Together, Gage went another year with his tube!karas camera 041

December 5, 2014 Posted by | Gage's allergies, LIVING | , , , , | Leave a comment

On A Dime

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. 20141117_154232Tinleigh 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)20141117_200241

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.

Forever,

Kara

November 17, 2014 Posted by | daily life, LIVING | , , , , , , , , | 4 Comments

Our EoE video

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.

EOE

May 23, 2014 Posted by | LIVING | , , , , , , , , , , , , , , , | 1 Comment

Please help us find a cure

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.

Donate $1.

Every little amount helps my kids come closer to one day being able to eat a normal healthy diet.

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May 19, 2014 Posted by | LIVING | , , , , , , | 2 Comments

Scope time

Jan. 2014 / April 2014

Jan. 2014 / April 2014

I want to start this post with a little comparison picture. Tinleigh got her feeding tube in January, three months ago, and has been elemental since then. Look at the cheeks on this girl! She’s finally getting the nutrition she needs. The day of her tube surgery she weighed in at 25 pounds. She was scoped this week and weighed in at 30 pounds. We definitely made the right decision.

Our initial plan after the kids being scoped in December was to wait until June to scope them again. We needed a break. Well that didn’t happen. Gage started having some reactions to the foods he was trialing and Tinleigh was BEGGING us to eat. Since it had been three months since her tube was placed it was okay now to go ahead and scope her. Same with Gage, we typically trial foods for three months then scope.

Gage was trialing cherries, tomatoes, pork and corn syrup. The cherries didn’t seem to be an issue. The pork we thought he was just truly allergic to and we were hoping it wasn’t effecting his esophagus. Some days he could eat pork with no problem. Other days he would cough, get itchy ears and throat. Tomatoes were starting to cause him to cough while eating them.

pork ribs and green beans

pork ribs and green beans

Typical scope day procedures. The kids were applauded for their good behavior and co-operation with everything. The doctor, anesthesiologist and I joked in the procedure room as Gage was being knocked out if we practice scope day at home because they do so well. Sadly, we’ve just done it so many times it’s just another day to them.

Tinleigh was first and she came out with the good results. I was fearful of what her results would show because she had eaten a few rice cakes and black olives in the weeks prior to her scope.

Trying plain rice

Trying plain rice

She showed no eosinophils in her biopsies so in a way she sort of passed rice and black olives.DSCN4315

 Moving forward I fed her rice everyday for a week and have since moved onto green beans. In another week we will try blueberries. She will be scoped again in three months to see how things are going in there.

Trying gluten free rice krispies for the first time

Trying gluten free rice krispies for the first time

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Next was Gage’s turn. Unfortunately his scope wasn’t so good.

Gages esophagus and stomach

Gages esophagus and stomach

As you can see in the first two pictures there are some bumps and lines, that’s bad. The esophagus should look smooth like the back of your hand. His biopsies showed greater than 40 eosinophils  in the upper, mid and distal (lower) esophagus. Nathan and I were both very sad for him. This means we have to remove pork and tomatoes from his diet. We knew from seeing reactions while eating those two things we had to remove them. I’m still sketchy on the corn syrup but that’s mainly in candy and he’s not eating a ton of candy so we’ll leave it in and pray his next scope in 6 weeks is clear.

I had to have a talk with Gage after we got the results to let him know how things were and break the news about pork and tomatoes. I sat him on my lap and we talked about what the doctor told me and I showed him his esophagus pictures. He then asked if he’s allowed to trial corn. I got a little teary eyed and explained we first have to take away the pork and tomatoes then we have to let his esophagus heal for 6 weeks. We’ll re-scope him to make sure he’s all better THEN we get to possibly try corn. I sort of reviewed with him how crappy the pork and tomatoes make him feel to help him be okay with getting rid of them. He understood. He wasn’t thrilled that we have to wait but he never threw a fit or cried. I then felt I needed to talk about Tinleigh’s results with him. Explaining that she had a good scope and will get to add foods this time. I reminded him of how exciting it was when he had his first clear scope after getting his button and getting to start foods. We agreed to be happy for Tinleigh and celebrate her good scope. Down the road I can see how this is going to make things extra hard. One having a good scope and the other a bad one. I need to make sure I cover all feelings and emotions now with them so there’s no jealousy or acting out in the future. EoE is not fair to begin with, throwing crappy results on top of that makes it worse. Especially if your sibling has good results.

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Gage keeps right on LIVING even with bad results. Catching crawfish

 

April 30, 2014 Posted by | Gage's allergies, LIVING, Tinleigh's allergies | , , , , , , , , , | 1 Comment

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