LIVING

With EoE, Allergies, Asthma and a G-Tube

Gage is Two!

Gage is two. I can’t believe it!

I found a great spice cake mix for him. It actually tasted like a real cake. Not as dense as the chocolate one I had for him last time. I made everyone eat it. No complaints.

Happy Birthday Gage

May 31, 2010 Posted by | daily life | Leave a comment

I like your bra.

While in the laundry room waiting for Charlie to change his pants he spots a clean bra in the basket.
Charlie: Mom, I like your bra. Do you know why?
Me: No, why?
Charlie: Because it covers your boobs so I can’t see them. Do you know why else? Because its big so it can fit your boobs.
All I could do was laugh.

May 28, 2010 Posted by | Life according to Charlie | , , , | Leave a comment

Double Scope Day

Not scoped top and bottom, but two boys each scoped.

Having any procedure done they always say no food or drink after midnight. So why would they schedule a 4 and 2-year-old at noon and 1 P.M.? We kept the boys up an extra hour thinking they would sleep in a little. No way. Charlie was up at 6:15 a.m. Explaining to a 4-year-old that he can’t have his morning hot cocoa wasn’t easy. Try skipping your coffee for a morning and see how grumpy you are. Gage slept until about 8. So to keep them busy and not thinking about food or drink I took them to pick out a toy. Totally worked! Everyone stayed happy.

We arrive at the hospital and daddy meets us there. They call Charlie back first and I go with him. Gage came shortly after with Daddy and they were across the hall. We get Charlie in his gown, answer questions and put some numbing cream where they would do the IV. He has no clue what is about to happen. We decided to keep it that way or we would have never gotten him in there without being clawed to death. So I ask the nurse if he will get the drink to make him loopy. She tells me no and asks how much help she’ll need getting blood and the IV into him. I said a lot he is big time drama. So she comes back with three nurses. No sooner did she have out the rubber band to go around his arm he was screaming and we couldn’t hold him down. Actually I don’t think I want to blog this story. It’s not nice, the turn out was horrible, I will be filling out a negative questionnaire. Let’s just say even the nurse was crying when it was all over. So once they take Charlie back we can hear Gage across the hall calling for us. I’m dizzy at this point because I hadn’t eaten either so I sat in Charlie room and nibbled a sandwich Nathan brought me while he went over with Gage. Gage was calm and relaxed from his drink. No worries in his room. The GI doctor came into his room very happy that she did not see anything wrong with Charlie inside. GREAT NEWS. Now it’s Gage’s turn. He went without a peep, just happy to be getting a table ride. Charlie came out and he was very drugged up. Again, I’m not going into it. The GI doctor came out a quick 5 minutes later. GAGE LOOKS GREAT! His swelling was gone! We couldn’t have had better news.

The first three pictures left to right are his scope from January. The last one is from Tuesday. You can see there is no more swelling and you can see the veins now.

Gage came back to us shortly after. Charlie pukes a few times. Then we all went home for the evening. In shock from all the emotional drama before and the great news after we were all four exhausted.

Now we just wait for about a week and we’ll have their biopsy reports to tell us their eosinophil numbers to make sure they’re both 100% okay. It’s going to be a long week of waiting.

May 22, 2010 Posted by | Charlie's allergies, Gage's allergies | , , , , , , , , , , | Leave a comment

The Doctor

So we met with our GI specialist today. We will scope Charlie to see if he does in fact have an eosinophils disorder. She again doubts he has it because he has no other signs but the fact that Gage has it and with our family history of food allergies we need to check. Especially since his list came up so long. We also talked about Gage’s new flare ups and how this keeps happening so we’ll scope him now as well. Tomorrow – two scopes.  Should be an emotional and interesting day.

May 21, 2010 Posted by | daily life | , , , , , | Leave a comment

Monkeys & bananas

Running circles around the inside of our house

Charlie: Hey mom! Know why I don’t like monkeys?

Me: Why Charlie?

Charlie: Because there’s bananas on my head! AUGH more monkeys are coming!

If I could just be in his mind for 10 minutes.

May 20, 2010 Posted by | Life according to Charlie | , , | Leave a comment

Education Thursday

Check out this great link on EE to learn a little more!

http://www.apfed.org/downloads/EE%20brochure_2008_Web.pdf

Having knowledge is the best way to help!

A little donation for research never hurt either. 

http://www.apfed.org/donations.htm

May 20, 2010 Posted by | daily life | Leave a comment

Wednesday Challenge

Wednesday is Fun with family and friends.

My Challenge for you is to eat like us for a day! Here’s your list of do not eat foods: wheat, soy, sesame, rice, oats, mustard, beef, all fish, chicken, celery, corn, peas, green beans, onions, garlic, eggs, potatoes, all nuts, pineapple, all melon. Make sure and read those labels!

May 19, 2010 Posted by | daily life | , , , , , , , , , , , , , , , , , | Leave a comment

Feathers

So while rushing the boys to get their shoes on and out the door Charlie says to me

“Mom, your feathers are in a bunch!”

New phrase and he nailed it.

May 18, 2010 Posted by | Life according to Charlie | , , | Leave a comment

Dum Dum

A treat is neat,

But what if this was ALL you could eat?

Learn more at www.apfed.org

 

 

May 18, 2010 Posted by | Uncategorized | , , , , | Leave a comment

Celebrating National Eosinophil Awareness Week

I know you may be aware that Gage, and possibly Charlie, has an Eosinophil Associated Disorder called EE. Eosinophilic (pronounced e-o-sin-o-fil-ick) Disorders are poorly understood and often misdiagnosed. While Gage and Charlie might look healthy on the outside, the reality is that this is a very difficult disease to live with. In honor of National Eosinophil Awareness Week, I ask that you take a moment to reflect on all the blessings you have in your life and think about how this disease impacts the boys and our entire family. We are in desperate need of research funding to find better diagnostic methods and effective treatments for Eosinophil Associated Disorder.

Gage’s Eosinophil Associated Disease affects our lives in the following way:

Gage was diagnosed in January of this year. We have remove 14 common foods from his diet. Cooking for a toddler in general is hard. Imagine if you can’t feed them chicken nuggets, french fries or mac n cheese. Removing 16 foods from Charlie’s diet until we know his diagnosis is a little harder. He’s use to the chicken nuggets and all the yummy things. Telling him he can’t have his favorite chips anymore while grocery shopping just breaks my heart.  

Please consider watching this short educational video http://apfed.org/video1/video1.htm to learn more about these disorders.

You can also make a donation online at http://www.apfed.org/donations.htm to support our cause.

  Thank you for supporting our family and taking the time to learn more.

2010

May 17, 2010 Posted by | daily life | , , , , , | Leave a comment

%d bloggers like this: