LIVING

With EoE, Allergies, Asthma and a G-Tube

Moving on

I’m going to play catch up real quick. Sort of a week in one post about how Tinleigh is doing and things I learned.

Tinleigh seems to have adjusted to not eating. She no longer goes to the pantry and asks. Which is a huge relief because it’s so hard. When she would go to the pantry I would tell her no that will make her belly hurt or it will make her puke. She knows what it means to puke. I would then offer her one of the candies she’s allowed to have. She doesn’t always want the candy so I have to quick think of a toy that we can go get busy playing with. That would usually do the trick. I think it took her a solid week to get over the food.

Let’s move onto candy. When you go elemental you can’t have foods that have protein in them. You are limited to only sugar things. However, sugar candy has a lot of crap in it such as corn starch etc. DSCN3986When Gage got his button we got a little cotton candy maker. Nathan made some up for Tinleigh. Although the idea of it was wonderful, she couldn’t eat it. She kept making a funny face then we quickly noticed she was getting a few hives around her mouth. Who knows what from. Very frustrating. IMG_8836She can also have pixi sticks. I hate the idea of my 2-year-old pouring sugar straight into her mouth but when it’s the only thing she can have you just let her. DSCN4011Tinleigh may also have Ramune original pop. She loves it. I don’t let her have a whole lot though because filling her belly with the pop can interfere with how much of her feed I can pump into her.

She’s had her fill of smarties, sweet tarts and dum dums. She actually will refuse them all. With the smarties it can actually only be the old label smarties. They’ve changed the ingredients and we can’t give her the new ones now.

Fun dips are always fun. They are messy though. I pour it into a bowl for her and she mainly just plays with it for a while.

I got a ninja blender for Christmas and I will crush up some ice in it like snow for her. She loves to eat ice. We can make Popsicles using Grape and cherry kool-aid. For that I use my new zoku popsicle maker. It will make popsicles in as quick as 7 minutes! Anything from kool-aid to smoothies.DSCN3881When all else fails a cup of water and toys is always fun. IMG_8834In terms of her button she’s adjusted well. She’s never tried to pull it out. I am guessing because Gage has one so she’s familiar with it. She has pushed at my hands while I am trying to hook her up or unhook her. I remind her that she can’t do that because mommy doesn’t want to pull her button. She comprehends that and will stop. I have kept one piece outfits on her all week. The type that button down. No onesie or undershirt though. That way when it’s time to hook her up all I need to do is unsnap a few snaps, hook her up then snap her back up. Once she’s hooked up she never messes with it. I always stay close to her though, I have to remind her to leave her back pack on. For bedtime I put her in sleepers only. Or a long sleeve onesie and pants. I don’t want the button to be exposed. She sleeps with a blankie and a few stuffed animals, I don’t want anything to catch on it.

I have given her a bath every night to make sure we keep her button clean. You are not allowed to submerge the button under water for two weeks. I had to keep her from laying down in the tub. I wash her as usual. Soap falling around the button will not hurt it. After I dry her off I gently wipe around the button with a q-tip to get any gunk off of it. This does not hurt her. While she’s in the tub I also ask her to turn her button. Just so she’s use to it moving and helps her to get comfortable with it. She will turn it to face the right way then pat it and say okay!IMG_8837I believe she has only puked twice since getting her button. We’re still adjusting her feeds to get her where she needs to be but we’re doing it slow enough she’s not having issues with it. She has to get 1200 calories a day. We’re around 1000 right now. Which is huge for her considering how little she was eating prior to getting her button. She’s actually gained a pound already in 9 days. She gets hooked up every three hours for about 45 minutes and takes in 8 ounces. We do this four times  a day then she takes a formula bottle at bedtime. I let her decide then how much more she wants. Compared to Gage who gets hooked up every four hours and takes in 15 ounces in 35 minutes. Our goal with Tinleigh is to get to 10 ounces four times a day instead of 8 ounces five times a day.DSCN3992

Overall Tinleigh is a new little girl. We were so miserable those last few months. No one was happy. She’s not whining all the time now or constantly yelling at me for food. She will actually go play with her toys now. Not just for five minutes either. She will sit and play for quite a while. She’s happy. Her belly is full. Don’t get me wrong, she’s still feisty. I can’t believe the change I see in her so quickly. I really know it was the right choice to put a feeding tube in her. DSCN3997Have we had our hard moments? Yes. We still try not to really eat in front of her. Charlie and Gage do, but I sneak eat. We have not all sat at the table and ate in front of her. We will eventually, just not yet. The biggest moment that sticks out in my head that I will never forget is the one evening I was unhooking her with Nathan right there. She was still in the phase of getting upset at the thought of it hurting. I told her not to push my hands because I didn’t want to pull her button. She put her hands down and whimpered as I unhooked it. We got all done and cheered but she just broke down into real tears. It was horrible. Like why do you keep doing this to me? She fell into Nathan’s arms and just cried. Very hard to handle as parents. We’re past her being scared now and so it has gotten easier.

We’re moving forward and LIVING!

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January 26, 2014 - Posted by | LIVING

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