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

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

   

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