LIVING

With EoE, Allergies, Asthma and a G-Tube

It Hit Harder Than I Expected.

This is long…

Gage has been trialing dairy. He had been begging to trial it. Our GI said okay, let’s just let him trial it and see what happens. The thing about dairy is it’s a huge trigger for the majority of EoE kids. The last time Gage had dairy he was 4. It was the very last thing we removed from his diet before he got his feeding tube.

Gage has had symptoms. He’s typically not symptomatic. He has had blood in his stool, his throat burns, chest pain, reflux, dark circles around his eyes… all signs he was failing. I only knew about the eyes and blood. He was keeping the other stuff from me, but told the GI doctor at our appointment. The thing about my boys is they don’t tell me these things unless it becomes unbearable. They’re tough kids. 20160128_080054A few days after the check up with GI Gage had his dairy trial scope. I knew it probably wouldn’t be good. After the scope the doctor came out with pictures as usual. He said it really hadn’t changed since his last scope, which was a fail. So I assumed dairy was a fail, but had hopes that maybe it was a low fail and it may be something he can have every now and then. He has so many Ige allergies it almost seems like we’re running out of options to trial. Ige allergies are separate from EoE triggers. They can sometimes cross paths, but if he’s having a reaction to a food he’s not going to trial it in fear of an anaphylactic reaction. 20160128_095525

Today the nurse called me with the results. Dairy is a huge fail for Gage. Eosinophil counts should be zero in the esophagus. Gage’s mid esophagus count was above 120, his lower esophagus was above 100. We will have to remove dairy for 6 weeks to let him heal and not add anything new in. We then need to decided if we want to wait 2 more weeks and scope him to make sure he is back at zero. We had removed rice, his first passed trial, because his numbers continued staying elevated. Which I think we will scope at 8 weeks. Then he will begin a lamb trial. With $5 strawberries and blueberries right now, along with $6 bags of shrimp and Tinleigh’s $5 chocolate chips why not add a super expensive meat. I may need a go fund me page just for our grocery bill. 20160128_100201

I am so sad for Gage. I don’t even want to pick him up from school today because I don’t want to tell him it’s a fail. Dairy was his dream food. He can’t have it, probably, for the rest of his life. This disease sucks. I can’t stop crying today. It’s rough on a mom. I know it’s him going through all of the scopes, skin prick testing, allergic reactions, pain from food trials, disappointment from failed scopes, it breaks my heart though to watch him endure all of this. It’s becoming harder and harder for me to stay positive for him, but I do.

This was a hard year for me. I’ve spent the last 6 years navigating this disease for 1, then 2, now 3 kids. I’ve learned so much about food, ingredients and have memorized so much. I’ve learned to keep them safe and taught them how to keep themselves safe. Crossing into 2015 I sort of took a step back and focused on myself for a bit. Something I hadn’t done in a long time. I chopped my hair off, got glasses that I had been avoiding for 10ish years, got myself into shape and started delegating jobs around the house so I didn’t feel so overwhelmed. It was the scopes in June that it hit me. I was feeling really good about life then I got the phone call that they had failed their scopes. I’ll never forget the feeling I had after that call. It hit me like a ton of bricks. Sort of like a back to reality hit. I cried and was really upset, more than I normally am. It really got me thinking and I’ve had a million conversations in my head the rest of the year.

I think I’ve entered the next phase of a mom with chronically ill children. The first phase was figuring everything out. Not it’s just a this is life, forever, phase. The reality is, it’s really sad. Do other moms like me go through these phases as well? It’s exhausting to think about. I don’t know why, but I feel really emotional now about the kids when it comes to EoE. Maybe my mind was so occupied before trying to figure everything out that I didn’t really see this lifelong disease for what it is. Now that I seem to have a lot more knowledge I can see the LONG road ahead of us. It seems like yesterday that Gage was diagnosed. It’s been 6 years. It flew by so fast.DSC03429

I’ll never forget the first few videos about EoE I watched in horror thinking that will never be my kid and we’re going to beat this. Boy was I wrong. Maybe that’s also part of why I feel the way I do now. I am exhausted from hearing blow after blow for them when it comes to more Ige allergies and more failed scopes. I know that’s how it’s always going to be. Today when I told Nathan about Gage’s scope results and how I just can’t quit crying for him he told me “Gage is strong. I need to get it (crying) out of my system and be strong again for him.” He also said “You are much stronger than you should be asked to be.” He’s right. That makes me wonder, maybe I’ve just held all the tears in for 6 years and I just can’t anymore. I don’t know. It feels like I’m somehow on the other side of things now looking in. Does that make sense? Maybe this seems silly to some for me to share all of these emotions, but there may be another mom out there wondering and feeling the same as I do. My blog has always been to help others stay positive and keep going. I have hopes to let other moms know, they’re not alone and that I’m not some wonder woman. I have feelings too. I’m going through my own journey as the kids face a chronic illness.

I do know that we will move forward as we always do. Gage and I will probably share some tears tonight. Tomorrow is a new day and this is our life. We will focus on something happy, like our upcoming vacation, and push the bad aside. Please lift Gage up in prayer that he has the strength to keep moving forward with a positive attitude. I know that God will give you, at times, more than you can handle. That’s when you lean on Him for guidance, strength and all you need.

Isaiah 26:4

Trust in the LORD forever, for the LORD, the LORD, is the Rock eternal.

If you have a $1 or two to spare, please donate in our name to CURED and help us find a cure so one day Gage, Charlie and Tinleigh can eat food again.

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February 2, 2016 Posted by | Gage's allergies, LIVING | , , , , , , , , , | 7 Comments

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

Here we are, I can’t believe it.

I remember when the allergist first told me about eosinophilic esophagitis. “It’s an allergy disease, you treat it with steroids and then you will gradually get eat regular foods again.” I thought oh that’s not so bad. We’ll get rid of all these allergies and everything will be fine. I then remember going home and finding out more about it. I read about kids with feeding tubes because they were so allergic. I watched videos and cried for those kids. Never did I think that would happen to us.

Tonight we told Gage he’ll be getting a feeding tube. I told my 4 year old he can’t eat food anymore because his body has become so allergic.

My sister-in-law ordered Gage a Tubie. It came today. Just in time for us to tell him before meeting with the surgeon tomorrow. 

The dog has a button just like Gage will get.

It honestly ran a chill down my spine when I first saw it. The thought of that sticking out of Gage’s belly. I know he needs it, he needs the nutrition to help him grow big and strong.

We started our talk tonight by just giving Gage the dog. He was so excited. We told him to check the dog out. For the first 5 minutes neither he or Charlie noticed the button. In the meantime Tinleigh was screaming at the dog on the other side of the ottoman. I finally had to tell the boys to check the dog out and find something special about it. Charlie discovered the button first. I explained to them that the dog has eosinophilic esophagitis just like they do. I then went on to explain the dog is allergic to everything, so to get what he needs to grow he gets his “milk” through a tube and it goes into the button. I then went into asking them if they remembered when they were just scoped and told them we the doctor called me with the results. This is when I choked up. I couldn’t get the words to come out of my mouth. I just couldn’t tell him. I looked to Nathan. He was the same as me. Right at that moment Charlie asked where the tube was to go in the button. I jumped right up and went to get it. Wiped my eyes quickly and sucked it up. Returning with the tube we tried to figure out how it worked. I managed to blurt out that Gage and I were going to see the doctor tomorrow and he would tell us how the tube goes in there because Gage was going to get a button just like his dog. Charlie instantly started getting upset and said “Oh I’m sorry Gage.” I said no Charlie it’s ok. It’s going to make Gage’s muscles big and help him grow. Gage grinned. I kept telling Gage that his esophagus just doesn’t like food right now. Charlie keeps trying to interrupt with “oh no I have bad news”. Nathan tried to quiet him as did I. You never know what’s going to come out of Charlie’s mouth. Finally Charlie couldn’t take it anymore. “Guys I’m sorry but this means we can’t wrestle anymore.” I let them know that they wouldn’t be able to wrestle for a while. Gage insisted that meant 3 weeks. I just went with it. Tinleigh is still screaming at the dog and now has a hold of the tube trying to put it on like a necklace. They overall didn’t have too many questions. I felt good. The speech I had planned in my head was nothing that came out of my mouth. What did come out of my mouth worked perfectly and that’s all that mattered.


Gage named his new friend Sarge because he is a police dog. Gage also played the I’m nervous card at bedtime. The typical 5 minutes after we put him to bed he comes out and says why do I have to get a button? I had him come sit on my lap and just said because your body doesn’t like any food right now. He then says “Oh, can I stay up?” He’s a sales man just like his daddy. Nathan almost laughed himself off the couch trying to hold it in. I had to turn on the hard mom face and shew him back to bed.
So tomorrow I get all my questions answered by the surgeon with Gage on my side. I’m sure I’m more nervous than he is. I hope it stays that way though. I don’t want Gage to be scared.

November 7, 2012 Posted by | Gage's allergies, LIVING | , , , , , | 9 Comments

   

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