LIVING

With EoE, Allergies, Asthma and a G-Tube

Results

Placing an order for a new super tubie t-shirt $11

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Donating $25 to receive  a tubie friend

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Ordering new feeding tube covers $28x

Putting a feeding tube in TinleighTinleigh-5298-2

HORRIBLE.

Doctor called with the kids results today. Both of the boys passed the fish trial! Gage also passed oranges and black olives. Our next trial with Gage will be cherries, tomatoes and spinach. We’re hoping to throw bacon in there once or twice a week but the doctor is thinking it over. We’ll talk with her next week. Charlie will just stay as he is, off of 13 foods. There really isn’t anything we can add back to his diet that he isn’t truly allergic to.  Neither of the boys will be scoped again until June unless there seems to be some issues in their esophagus.

Tinleigh’s scope was bad. Not as bad as Gage’s right before he got his tube, but she should have been a zero with these last changes we made. She had greater than 50 eosinophils in the upper, mid and lower esophagus. She will go in Monday for a GI test to figure out where her stomach lays in her body. The surgeon and GI doctor are trying to line up their schedules and Tinleigh will get her feeding tube in the next few weeks. Pretty crappy way to start out 2014. However, Tinleigh has been miserable. Screaming in the pantry, always hungry. She’s sick of drinking the elemental formula. Hands me back her cup and tells me “no, yucky”. She doesn’t have much food that she can eat, what she can have she doesn’t want.  She’s lost a few pounds over the last two months. She is a toddler and she needs nutrition not only for her body to grow but her for brain to develop as well. So even though it totally sucks it’s going to be best for her, just like it was for Gage. Yes, I do know how to handle it and I know what to do for her once she gets the button. It’s still very gut wrenching that we actually have to do it. You never want to see your child go through something like this. So it’s very hard for Nathan and I to accept that this is where we are with her. We’re just past a years time that she was even diagnosed. Gage was four when he got his button and aside from pain we really didn’t have many troubles. Tinleigh is feisty and two. We’re going to buy lots of onsies and one piece outfits in hopes that it will keep her from trying to pull it out. It will be hard. Hopefully since she has seen Gage with his and knows about button patches, hooking up and wearing a book bag around she’ll be a little better with accepting it.

We’ll see.

December 27, 2013 Posted by | Tinleigh's allergies | , , , , , , | 3 Comments

Christmas parade!!

Our new little town decorates for Christmas and I love it. All the trees lining downtown get lights. The lamp posts all have Christmas wreaths on them. Tonight they had a parade and the lighting of the the town tree. So off I went with a neighbor and the kids. It was 30 degrees, but darn it we were going to see that parade.

We arrive and instantly the boys are asking if they will be throwing candy. Well crap I hadn’t thought of that and we haven’t been to a parade since Gage has had his tube. How do I handle this one? Luckily the only thing they were handed was a candy cane. What brand is it? What sort of factory? Is there cross contamination? I told them to shove them in their pockets and wait until we got home because if something happened I didn’t have anything with us. I also really didn’t want Gage eating it because of the corn syrup. We’re getting scoped in two weeks. I REALLY want him to be clear. So I was also trying to figure out some sort of plan so he wouldn’t eat it when we got home.

The parade was small, thank goodness. It was freezing out. It was super cute.

STUFFED in the stroller.

STUFFED in the stroller.

The little downtown

The little downtown

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The boys thought this was hilarious

The boys thought this was hilarious

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Yowza that's a big snowplow!  I've never seen one that big.

Yowza that’s a big snowplow! I’ve never seen one that big.

Papa we think you should decorate your semi trucks!

Papa we think you should decorate your semi trucks!

The loud horns shocked Tinleigh every time.

The loud horns shocked Tinleigh every time.

Blurry, Mr. & Mrs. Claus

Blurry, Mr. & Mrs. Claus

The town tree. Again, blurry.

The town tree. Again, blurry.

After the tree was lit we headed towards the car and heard a huge boom! We turned and saw fireworks! They went all out. So we watched them as we kept walking to the car. I couldn’t feel my toes by this point and knew Tinleigh was probably frozen as well.

Of course we arrived home and Gage immediately wanted a candy cane. I caved. It sucks and it’s so hard to say no sometimes. Darn food. Isn’t there suppose to be a point in the future where we all just take a pill instead of eating food? I wish we were there. No matter where we go there’s always food, even a parade.

December 8, 2013 Posted by | Gage's allergies | Leave a comment

Get the stink out

There was an oder coming from Gage. Even after his shower. I thought it was his button or the button-hole. We wash it everyday and it wasn’t extra gunky so I was sort of stumped as to why it stunk so bad. Then one evening before putting  a new button patch on him i sniffed the button patch. YOWZA!! There was the smell. Phew, Gage was clean. So I ordered a dozen new button patches. It had been a year since he got his first set so I figured he might like the change anyways. I wasn’t happy though about the stinky patches. I wash them after every use. They shouldn’t be so stinky. Then I remembered the posts I had seen on pinterest on refreshing your bath towels. So I did the search and found all the pins for the recipe.

Run a load of towels through on hot water with one cup of white vinegar.

Once it’s done run it through again on hot with a 1/2 cup of baking soda.

So I grabbed a few towels and all of his button patches and threw them in. Low and behold it worked. They came out stink-less! I was so excited! There was one that was just done and I had to throw it away, but the rest were like new. So now Gage smells like his cute little self again!

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December 7, 2013 Posted by | Gage's allergies, LIVING | , , , , | Leave a comment

LIVING with a feeding tube

I want to share Gage’s past year living with a feeding tube in pictures. I don’t think there was anything he wasn’t able to do that he wanted to do.

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The big day. Going into surgery

We had Christmas shortly after

We had Christmas shortly after

Went through us moving to another state a month after surgery.

He went through us moving to another state a month after surgery.

Playing cowboy with his feeding book bag on

Playing cowboy with his feeding book bag on. Look at that tiny belly!

They ate snow

They ate snow

We saw some weird stuff come out of it. (fun dip)

We saw some weird stuff come out of it. (fun dip)

He could swing

He could swing

Play in the snow

Play in the snow. We’ve even gone sledding.

Got cool new t-shirts.

Got cool new t-shirts.

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Found some yummy rock candy he could have

Played in the ocean

Played in the ocean

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Was able to do mechanics work while feeding.

Was able to do mechanics work while feeding.

Played with play-doh

Painted Styrofoam Easter eggs

Instead of an Easter basket filled with candy he got cooking utensils. Cooking is a big thing for him.

Instead of an Easter basket filled with candy he got cooking utensils. Cooking is a big thing for him.

He could have sprite if we got fast food

He could have sprite if we got fast food

More allergy testing once he had a clear scope to figure out what we could add to his diet.

More allergy testing once he had a clear scope to figure out what we could add to his diet.

His button accidentally got pulled out and he had this horrible tube for a while before his new button arrived. We put in the button at home.

His button accidentally got pulled out and he had this horrible tube for a while before his new button arrived. We put in the button at home.

Drain the balloon holding it in on the inside.

Drain the balloon holding it in on the inside.

The hole

The hole

Putting the new button in.

Putting the new button in.

All done! What you don't 'get from the pictures is Tinleigh screaming in the background to be part of it. Charlie trying not to look but couldn't help it and was acting like he was going to puke.

All done! What you don’t’get from the pictures is Tinleigh screaming in the background to be part of it. Charlie trying not to look but couldn’t help it and was acting like he was going to puke.

He's been scoped clear three times with his button.

He’s been scoped clear three times with his button.

He turned five and HAD SAFE CAKE.

He turned five and HAD SAFE CAKE.

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Got to go to Chuck e cheese for his birthday. Had a feeding on the go

Got to go to Chuck e cheese for his birthday. Had a feeding on the go

Graduated Pre-K

Graduated Pre-K

Picked strawberries

Picked strawberries

Played in the sprinkler

Played in the sprinkler

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Shot his bow

Shot his bow

Somehow managed to become even more handsome.

Somehow managed to become even more handsome.

Helped vacuum cars

Helped vacuum cars

Was an artist for a day

Was an artist for a day

Has worked his way up to a plate of food!

Has worked his way up to a plate of food!

Figured out a way for him to have Popsicles!

Figured out a way for him to have Popsicles!

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Got very muddy

Got very muddy

Took part in a lowes building class

Took part in a lowes building class

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Hit off a golf ball at the start of his cousin Ellie's Par-tee for CURED.

Hit off a golf ball at the start of his cousin Ellie’s Par-tee for CURED.

Took part in the giant slip n slide

Took part in the giant slip n slide

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More scopes

More scopes

Took some gymnastics classes

Took some gymnastics classes

Scared the crap out of me

Scared the crap out of me

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Went exploring with Charlie

Went exploring with Charlie

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Picked out and carved pumpkins

Picked out and carved pumpkins

Went trick or treating

Went trick or treating

Got his favorite thing ever. A Benik belt. Protects his tube from being pulled out.

Got his favorite thing ever. A Benik belt. Protects his tube from being pulled out.

Went to the zoo and was hooked up

Went to the zoo and was hooked up

Fed birds

Fed birds

Got a cyst

Got a cyst

Got button patches

Got button patches

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Swam at friends houses

Swam at friends houses

Played outside like a boy!

Played outside like a boy while hooked up!

Got his button pulled out again

Got his button pulled out again

Started kindergarten

Started kindergarten

Wiped out on his scooter

Wiped out on his scooter

Had a bowl of cereal!

Had a bowl of cereal!

Played with his lizard

Played with his lizard

Ate a meal with Charlie!

Ate a meal with Charlie!

Did a fish trial

Did a fish trial

Had a very scarey episode of the flu

Had a very scarey episode of the flu

We have our moments. He asks when he will get it out. He always talks about wanting bacon, tacos and hotdogs. I always assure him we’ll eventually get there. He never throws a fit about not being able to eat something. Sometimes he does cry though. He’s healthy and thriving now. Packed on 11 pounds and is high on the charts for his height and weight, just like when he was a baby. I still have a love/hate relationship with the button, but seeing how healthy he is tends to make me forget how much I hate him having to have it.

You rocked a year with your button Gage! Here’s to another year and adding more food to your diet so we can get rid of it!!

December 5, 2013 Posted by | Gage's allergies, LIVING | , , , , , | 1 Comment

It’s been a year

Tomorrow will be the one year anniversary of Gage getting his feeding tube or button as we call it. I just reread a few posts from last year this time. Wow, it was a crazy time for us. I have no idea how I got through it. I was struggling, and I still have my days. What mom doesn’t though.

Root Family2013-44Gage is doing great! He goes to kindergarten for a full school day. I hook him up in the morning before he wakes to time up his feeding with his lunch time at school. I pack his feeding tube bag and we drop it at the nurses office every morning at school. She hooks him up a little before lunch and he’s done shortly after. He at first fought the idea of doing that but I assured him no one would know he was hooked up. They would just think he was wearing his backpack. Once he was at school it was a different story. I had his teacher read the tubie book to the class and Gage proudly showed his button to everyone. He is proud of his button. He even shows everyone when he gets a new button patch. He does have a lunch box and I pack him something to eat. He usually doesn’t eat it because the formula fills him up. We’re at the stage right now where he wouldn’t have enough food to eat to replace that feeding at school. He also gets to have snack with his class in the afternoon. He is hooked up two more times after he gets home to equal the 1500 calories he needs. If he wants to eat then we do that instead. Some days he would just rather be hooked up. Some days it’s just easier to hook up.

Gage is up to 7  foods right now. So far he has passed blueberries, rice, tapioca, strawberries, lemons, cocoa, and green beans. We are currently trialing fin fish, black olives and oranges. So far so good. Getting him to eat the fish is a little hard. He doesn’ really hate it or love it. I make sure and get some in him once a week. We have found some chocolate he can have that’s safe. It is expensive but it’s safe and he loves it. When your kid can’t eat price doesn’t matter.  All three kids will be scoped the week before Christmas to see if they have passed the fin fish trial. I will honestly be shocked if they do since it’s such an allergic food. I do pray though that they pass.

I would like to point out Gage’s belly button in the picture. If you notice he really has an outie. During the surgery to put the button in the doctor stitched his belly button in so he had an innie. Once we were home from the hospital Gage noticed this and was so angry at me for letting the doctor do that. As you can see though, over time, that little belly button made its way back out. Gage is thrilled to have his outie back.

We are going to celebrate tomorrow. I got Gage a new tubie t-shirt since he has outgrown his. He has gained 11 pounds since getting his tube. Proof he really did need the button. Poor guy just wasn’t growing and getting what he needed to thrive. He even gets some new button patches to celebrate. I am also going to post a great blog about a year with a tube! Stay tuned.

December 4, 2013 Posted by | Gage's allergies, LIVING | , , , , | 2 Comments

   

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