LIVING

With EoE, Allergies, Asthma and a G-Tube

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

Spring Already?

Everyone is experiencing the wonderful warmer weather and enjoying it! Nature is blooming all around us at our house and we’re taking full advantage.

We went fishing last weekend. Tinleigh went too. She’s got a lot of firsts coming her way this summer. I’m not sure how her feisty attitude is going to flow as we tote her from place to place and through all the summer activities. Maybe I’ll get her a t-shirt that says chillax, chill + relax.

That way as she’s throwing her fits in public people will still think she’s cute and giggle at her t-shirt.
I really didn’t want to go fishing when Nathan asked. Something just kept nudging me to go. I agreed even though there were 1,000 things I wanted to do around the house. It was sunny out and I thought maybe I could start working on my tan.

                                               So I pack:

the boys snacks

the emergency bag

the diaper bag

stroller

rubber boots

then fed the kids.

We were ready.
We arrive at the pond. Where in the world did this wind come from?! We’re all in shorts and t-shirts. I needed a hoodie. Luckily I had extra pants and a blanket for Tinleigh. The sun magically disappeared too.
The boys instantly took off hunting for things, bugs, frogs, worms, snakes and anything that was gross.

Nathan castes his line and instantly hooked a bass.

He threw it back and instantly caught another.

This went on 4 or 5 times. I kept telling him it was the same one. So he kept the next one. There weren’t anymore caught for a period of time.

That poor fish ate good but must have been stupid.

The boys finally became interested in actually fishing. Gage caught one and was so proud of himself.
Tinleigh did fine until she got tired. Then it was a gloves off battle. I went ahead and mixed her up a bottle thinking that would help her fall asleep. The wind was so strong that when I took her out of the stroller she couldn’t catch her breath. So we moved to the truck. Apparently I didn’t put enough rice in the formula and I had the new #4 nipple on it causing her to keep choking as she tried to drink. Well this was like adding fuel to the fire. Boy was she fired up. She also pooped while she was eating, something else that sets her off. The girl does not like poop in her diaper. After feeding her, changing her and finally finishing the bottle she was happy. Not sleepy, but happy. I’ve also come to realize that unless she’s in her bed she will not nap long. Usually 10 min tops. She’ll even wake up as I’m driving. Most babies fall asleep and stay asleep during car rides. Not my Tinleigh.

She eventually napped by the pond, for ten minutes.

After 3 hours it was time to think about heading home.

I looked at the boys.

They were smiling little mud balls.

Gage had a tiny frog hanging from his finger by it’s tongue.

Charlie had his boots off worried about the mud in his boo boo on the bottom of his foot. The boo boo he got while walking shoeless in the creek where the sewage water ran into after backing up in our basement. A whole other story.

Nathan was proud of the fish he had caught that day.

The fish that no one can eat.

Tinleigh saw her first bass and proved she will bring her temper with her whatever we do this summer.

The boys had a great day in nature, even though everything is in bloom they did not have any asthma or sinus issues!

March 28, 2012 Posted by | daily life, LIVING | , , , , , | Leave a comment

   

%d bloggers like this: