LIVING

With EoE, Allergies, Asthma and a G-Tube

Five Year Anniversary

Today I told Tinleigh it was her 5 year tubie anniversary. She looked at me funny and said “I dont even know what that means.” I explained that 5 years ago today she had her feeding tube put into her belly. She was still very confused. I asked what part didn’t she understand. She said “I thought I was born with it”.

That caught me off guard.

So tonight I showed her my posts about when she had her tube placed. We read over the day she got the tube and the days following. Not a memory of any of it in her memory bank. I am SO thankful I’ve written this blog and was able to go back and show her. I had done a small series on what it’s like having your toddler get a feeding tube.

Today Tinleigh thrives. I wouldn’t say she loves her mic-key button, but she is at peace with it. I am proud of her. I admire her. She has a warm heart for everyone. She has shown us, just like Gage, that a tubie can do anything. DSCN3970Day one

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Swimming

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Dancing

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Knows how to have fun with her woes.

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Fishing

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Softball

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Bounced

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Learned to ride a bike

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Sported a 2 piece!

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Played in the snow

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She genuinely enjoys life and lives it to it’s fullest. Her allergies and feeding tube don’t stop her from finding the joy in the life she was given.

January 14, 2019 Posted by | LIVING, Tinleigh's allergies | , , , , , , , , | 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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