LIVING

With EoE, Allergies, Asthma and a G-Tube

Their lives

Things have been crazy. Just plain crazy.
Nathan took a new job in another state. He left us at the beginning of December.
Gage got his feeding tube a few days later.
Tinleigh was scoped the next week.
We found out Gage’s formula wasn’t covered.
Tinleigh’s results came the following week.
Charlie started his Christmas break with 9 stitches.
Then we had Christmas.
Knowing by law the state we were moving to required insurance to cover Gage’s formula, we changed our moving date from the end of January to the second week of January.
I got the flu.
Charlie had his last day of school.
The movers took our stuff. 
The kids and I had a mini 3 day vaca in Ohio with my family.
We arrived at our new temporary house.
Here we are. Still in boxes.

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There are so many details in there. I’ll break them down, just not all in one blog.

I’ll start with Gage. He’s doing good. Physically he’s doing great. Mentally though, I don’t think he’s great. Getting the g-tube was hard. Very scary for him. It hurt very bad. He cringed every time we had to mess with it. It’s like an old shoe now. He even knows how to hook himself up and flush it when he’s done. Gage eats 5 times during the day, every 3 hours. It is like having a baby all over again. Some people chose to do night feedings that are more like a slow drip over 10 hours or something. I didn’t feel like that would be good for Gage. He tosses and turns so much I didn’t want a tube waking him up every time he rolled over. He’s 4, he needs his sound sleep.
In a month we get the button changed for the first time. That will be scary for him I’m sure. I’m not sure I’m ready to have to do that on my own. I don’t handle things like that well.
He still asks for food on a daily basis. He asks not in the way of “can I have it right now” but instead, “when I don’t have my button can i eat …?”  It makes me so sad. I thought at his age it wouldn’t be too big of a deal. Little man wants food though. He doesn’t want candy. He wants home-made chicken and carrot soup, BLT sandwiches, cheese and crackers and chebe. He told my mom the first things he’s going to eat when his button comes out are a milkshake and french fries. How sad is that. He’s already planning his little meal out and we don’t know if that day will ever come for him. His next scope will be in March. We are praying he will have zero eosinophils or at least show some improvement.
On a happier note, he is gaining his weight back and I think has put on a pound extra. I need to find my scales in the stacks of boxes! He’s definately getting the nutrition and calories he needs. He goes through almost an entire can of his formula a day. It costs us roughly $1100 a month to feed him right now until we get coverage. We’re still fighting our old insurance trying to get reimbursed. We’re in the process of trying to have his old GI doctor call the scrip in for the formula so the new insurance will authorize it. Since we won’t see his new GI doctor for another month he won’t call the formula in for us yet. Until then the formula is still out of our pocket. I hate making phone calls at this point.
I also still hate the grocery store. I didn’t think I could hate it more, but taking Gage there now, I definitely do hate it more. I hate food. I hate eating. I hate allergies. I hate EoE. I have a hate / love relationship with the feeding tube.
We are still LIVING and I stay as positive as I can for the kids. Fact is though, its so mentally and physically exhausting. I am constantly making special meals for Charlie and Tinleigh while hooking up Gage in between. Trying to remember when I last hooked Gage up. Trying to remember who can eat what between Charlie and Tinleigh. Trying to think of something they haven’t eaten lately so they aren’t so bored with food. Then getting to all the dishes. Multiple pots, pans and utensils from making sure things aren’t stirred with the wrong spoon.
A day in the life of an allergy/tubie mom. I think we all deserve some sort of daily reward. 

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This was suppose to be our Christmas / we’re moving announcement card. Needless to say I got way too busy this year and they didn’t go out. We hope you all had a wonderful Christmas and 2013 is a great year for you! Keep on LIVING!!

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January 14, 2013 - Posted by | LIVING

3 Comments »

  1. what formula is he on? I have some Peptemen Jr Vanilla flavor and Elacare I can send you . Insurance stopped covering formula for kids here unless they are on feeding tubes (or at least my kids insurance) but Wic covers it for kids under 5.

    Like

    Comment by Leah Rosenbaum | January 15, 2013 | Reply

  2. As always, hugs and prayers your way… 🙂 Miss you, my friend!

    Like

    Comment by Jessica | January 15, 2013 | Reply

  3. […] 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 […]

    Like

    Pingback by It’s been a year « LIVING | December 4, 2013 | Reply


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