LIVING

With EoE, Allergies, Asthma and a G-Tube

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So sorry I’ve been away. Life has consumed me!
I will try and get back soon as Gage is getting his G-tube next week.
Guess I’ll be adding that to my everyday blog topics.
I’ll be back soon! With some big new too!

November 30, 2012 Posted by | LIVING | 2 Comments

We saved a turkey

Today while picking up Gage from school I overheard moms talking about their turkey and getting it ready. Will it be thawed on time, different ways to thaw it, giblets and how big the turkey was. I thought to myself “Wow I have none of this knowledge and I will never need it.” I will never have to cook a Thanksgiving turkey, ever. Nathan and all 3 kids are allergic. We live far from family so there is no chance I will ever host Thanksgiving.

I will have saved a small flock of turkeys over my lifespan.

Here are some other fun facts about food in my house.

In my house 3 out of 5  people can’t have dairy or apple.

We drink 4 different kinds of milk. Dairy, soy, rice and coconut.

The only meat everyone can eat is pork.

The only vegetables everyone can eat are broccoli, cauliflower, okra and brussel sprouts.

Banana is now a 4 out of 5 allergen in our house as well as all nuts and shell/fish.

I only buy two 6 packs of eggs a year. Maybe 8 total get used.

The only two people that eat a matching dinner in our house are Nathan and I.

I still can’t time up dinner so that we can all sit and eat together. That stinks.

The only safe thing at McDonald’s my kids can have is sprite. We do allow Charlie to get milkshakes though. He could have the apples too, but I think it’s silly to pay $1.00 for 4 apple slices.

So I hope all the turkeys out there are saying thanks to my family for sparing one of their own every year!

I sure do miss left over turkey and miracle whip sandwiches. I’m the only one that can have miracle whip so I don’t buy that either.

November 19, 2012 Posted by | LIVING | Leave a comment

Snake trap

Charlie dreamed up a plan to make an animal trap, specifically for snakes. I love his mind.

Here’s the plan he drew up. He wanted it 2 feet wide by 10 feet long. We told him that was too big so he changed it to 5 feet long. I asked about the height. He hadn’t thought of that and quickly wrote down 1 foot high.  As you can see by the picture it’s pieces of wood with a window in the side so he can observe the animal after he catches it. On the top you’ll see a metal hoop that he can tie a rope to so he can lower and raise the trap. There would be no floor, just four sides and the top.

Daddy being the sucker he is thought that he would fulfill Charlie’s dream. Off to Lowe’s they went. They arrived home with some wood and plexiglass. I know how Nathan’s brain works, it doesn’t do puzzles. I couldn’t wait to see what they came up with. Much to my surprise it came out great! It’s not 5’x2’x1′, but to Charlie it’s the best thing ever. Today he took it out front to try it out for real. Of course it’s 42 degrees and there are no snakes around but he still had fun!

Come in our yard next summer snakes, Charlie dares you.

November 13, 2012 Posted by | LIVING | , , | 1 Comment

30 Days of Thanks

I am thankful for

1. The wonderful children God has given me. I love their brains, kindness, easy-going nature, loving hearts and energetic little bodies.

2. My parents. I think I turned out pretty good and I owe a lot of that to them. I only hope I can do as well with my kids. I always know they’re there for me and they love me.

Circa 1983ish

3. The inventors of coffee and coffee accessories. COFFEE

4. Nathan – He’s a great dad, provider and friend. I love that I can stay home to raise my kids.
image

5. Fruit roll ups. I received the longest tightest hug today in the grocery when I discovered Gage could eat them. Happiest boy on the planet. The healthy fruit leathers I’ve tried to buy all have apple in them. Thank you Betty crocker for filling these with nothing healthy, but instead sugar so Gage can enjoy them too!

6. The invention of the shark mop!!!!

7. Today I’m thankful for Tubie‘s. Ours made explaining to Gage about his feeding tube a lot easier.

8. My brother Doug. I’m glad he punched me everyday on the way to school. Made me tough. 😉

9. The gift of life God has given to me.

10. For trips out of the house by myself.

11. Rainy days!

12. My Brother Brad. When ever I need to smile I think of the time when “Lean on Me” came on the radio and he started dancing and singing. It’s forever burned in my head and makes me smile when I think about it. That would be the Club Nouveau version 1987.

13. Tinleigh. Even though she does enjoy screaming at the top of her lungs often for no reason at all and it makes us all crazy, I am absolutely in love with the way she giggles at herself all the time now. It makes me laugh right along.

14.  Long naps taken by baby so I can relax my mind from baby screaming.

15. That I have self control

16. Wine friday.

17. Mums. They are still bringing color after the leaves fall.

18. Rachel. I couldn’t ask for a better friend.

November 13, 2012 Posted by | LIVING | , , , , , | Leave a comment

Here we are, I can’t believe it.

I remember when the allergist first told me about eosinophilic esophagitis. “It’s an allergy disease, you treat it with steroids and then you will gradually get eat regular foods again.” I thought oh that’s not so bad. We’ll get rid of all these allergies and everything will be fine. I then remember going home and finding out more about it. I read about kids with feeding tubes because they were so allergic. I watched videos and cried for those kids. Never did I think that would happen to us.

Tonight we told Gage he’ll be getting a feeding tube. I told my 4 year old he can’t eat food anymore because his body has become so allergic.

My sister-in-law ordered Gage a Tubie. It came today. Just in time for us to tell him before meeting with the surgeon tomorrow. 

The dog has a button just like Gage will get.

It honestly ran a chill down my spine when I first saw it. The thought of that sticking out of Gage’s belly. I know he needs it, he needs the nutrition to help him grow big and strong.

We started our talk tonight by just giving Gage the dog. He was so excited. We told him to check the dog out. For the first 5 minutes neither he or Charlie noticed the button. In the meantime Tinleigh was screaming at the dog on the other side of the ottoman. I finally had to tell the boys to check the dog out and find something special about it. Charlie discovered the button first. I explained to them that the dog has eosinophilic esophagitis just like they do. I then went on to explain the dog is allergic to everything, so to get what he needs to grow he gets his “milk” through a tube and it goes into the button. I then went into asking them if they remembered when they were just scoped and told them we the doctor called me with the results. This is when I choked up. I couldn’t get the words to come out of my mouth. I just couldn’t tell him. I looked to Nathan. He was the same as me. Right at that moment Charlie asked where the tube was to go in the button. I jumped right up and went to get it. Wiped my eyes quickly and sucked it up. Returning with the tube we tried to figure out how it worked. I managed to blurt out that Gage and I were going to see the doctor tomorrow and he would tell us how the tube goes in there because Gage was going to get a button just like his dog. Charlie instantly started getting upset and said “Oh I’m sorry Gage.” I said no Charlie it’s ok. It’s going to make Gage’s muscles big and help him grow. Gage grinned. I kept telling Gage that his esophagus just doesn’t like food right now. Charlie keeps trying to interrupt with “oh no I have bad news”. Nathan tried to quiet him as did I. You never know what’s going to come out of Charlie’s mouth. Finally Charlie couldn’t take it anymore. “Guys I’m sorry but this means we can’t wrestle anymore.” I let them know that they wouldn’t be able to wrestle for a while. Gage insisted that meant 3 weeks. I just went with it. Tinleigh is still screaming at the dog and now has a hold of the tube trying to put it on like a necklace. They overall didn’t have too many questions. I felt good. The speech I had planned in my head was nothing that came out of my mouth. What did come out of my mouth worked perfectly and that’s all that mattered.


Gage named his new friend Sarge because he is a police dog. Gage also played the I’m nervous card at bedtime. The typical 5 minutes after we put him to bed he comes out and says why do I have to get a button? I had him come sit on my lap and just said because your body doesn’t like any food right now. He then says “Oh, can I stay up?” He’s a sales man just like his daddy. Nathan almost laughed himself off the couch trying to hold it in. I had to turn on the hard mom face and shew him back to bed.
So tomorrow I get all my questions answered by the surgeon with Gage on my side. I’m sure I’m more nervous than he is. I hope it stays that way though. I don’t want Gage to be scared.

November 7, 2012 Posted by | Gage's allergies, LIVING | , , , , , | 9 Comments

Charlie’s test

Charlie had his turn at the allergist. I hate putting him through it. He absolutely fears needles. He’s had some bad experiences that are just forever in his mind. The night before I told him we were headed to the allergist in the morning. He started crying. I told him Tinleigh did it and Gage did it. I also told him Gage didn’t even cry this time around. Which, he didn’t, but they did it on his arms and there weren’t too many. Gage assured Charlie it wouldn’t be bad. They always try to comfort one another with kind words.

After dropping Gage off at school Charlie and I made the hour drive to our new allergist. Daddy kept Tinleigh because I knew it probably wouldn’t be fun in a tiny room with an upset Charlie and screaming Tinleigh.

We arrive at the office and are called back to the room. Charlie is talking the nurses ear off as he usually does. We get in the tiny room and he freaks. We assure him the needles won’t happen quite yet. Then I see the doctor. We discuss what we want to test for. He leaves the room and Charlie makes his move. I knew he was scared and I didn’t blame him. I promised him a milk shake when we were done and we talked some more about Gage and Tinleigh being brave when they did it. He came out on his own. Thank goodness. The nurse comes in with trays of vials. My stomach dropped. She asked Charlie to hop on the table and take his shirt off. There were too many to do on his arms. Then my chest got tight. She showed Charlie on his hand what she was going to do. He begged to see the needle. I explained she had to keep it clean until it was time to use it. We got him on his belly and I asked her if she had a friend to come help. I knew someone would have to hold his legs. She quickly grabbed a friend and went to work. Charlie was so nervous, he kept trying to peek over his shoulder. We assured him she wouldn’t get the needle out until she tells him. I had the dvd player right in his face to try to distract him. It didn’t work. Then it was time. He had 66 drops of liquids on his back. That meant 66 tiny needle scratches. I held his little shoulders down and she went to work. It was horrible. She worked quick though and got it done in maybe 30 seconds. He begged her to stop and give him a break. I was glad she didn’t, I don’t think he would have let her finish. Wow did he welt up. We retested him on every inhalant. That would be trees, grasses, molds, animals and dust. He is allergic to EVERY inhalant but one mold. EVERYTHING. The only foods we tested him on that he’s currently eating were chicken and oats. Chicken was positive, as it was before, and oats were negative. Beef and soy are now negative which was a shock. Eggs are now testing positive, when in the past they were negative, but he doesn’t eat them because of getting hives. All nuts and all fish are still positive, strange because he’s eaten lobster and shrimp just fine. It’s all a jumbled mess. So what do we do? His biopsy numbers are low and could simply be from the reflux he’s been having. Then again it could be from the chicken he’s eating and he’s starting to flare. Do we feed him beef when it made his lips blister before? What if beef is what made him flare in the very beginning?

It’s just all a risk. So Nathan and I decided we’re taking away chicken, keeping him on his reflux medicine and slowly reintroducing beef. We’ll keep him this way for the next 6 months and then re-scope him. If he starts having issues then we’ll remove the beef and get him scoped sooner. I won’t allow him to eat beef at school or a McDonald’s burger quite yet, but at home with mom and dad it will be allowed.

November 6, 2012 Posted by | Charlie's allergies | , , , , , , , , , , | 3 Comments

Good News!

Finally, some good news. Something to smile about. Who would have thought I would be smiling leaving the allergist office.

Today was Tinleigh’s first allergist appointment. They did a scratch test on her. How do you scratch test a baby? I laid on the table. She laid on my belly on her belly. I held her arms and head while a nurse held her legs. They are very quick at it and she really didn’t get too mad. I was afraid she would scream and make herself puke right in my face.

We tested her on the common 8, a few molds and then about 8 more foods that the boys have in common. The giant red mark is her milk allergy that we knew about. She’s also allergic to chicken, apples and an indoor mold. THAT’S IT! I was elated. I couldn’t have been happier.

After a quick discussion with the allergist we came to an agreement that her constant gunky cough and ear issues may be due to the fact that she’s always eating apples. So she is now apple and chicken free. Hopefully the gunk goes away.

With so little showing up on the allergy test my hopes of her being Eosinophilic Esophagitis free are a little higher. Not too high though. Charlie was 4-1/2 when his allergies all popped up. But I’ll take this for now! Her scope is scheduled the beginning of December.

What a great day in our world of allergies. Shoot, milk, chicken and apples? That’s a walk in the park.

November 2, 2012 Posted by | Tinleigh's allergies | , , , , , | 1 Comment

Educational Day!

Since I took Charlie out of school for 4 days I knew we had to do something educational. So I planned the 3rd day to a science center.

Having woke up with food poisoning I wasn’t very fast to get ready that morning. Luckily all three kids slept until 9. That gave me time to be sick and get myself ready. By 11 I had the kids ready and was physically able to leave the room. I decided to start slow so we took a mini trip to walmart then went and got daddy some lunch. After dropping it off to him we made one quick stop back to the hotel to eat and then we were on our way. I didn’t feel like packing up a bag full of food.

We got to see a giant space satellite and that was just on the outside. This place was going to be awesome.

There were 3 full floors of science. Where do we begin? Well I picked the wrong area. The boys found the water tables. They did provide jackets, they obviously hadn’t met kids like mine before.

Charlie had pipes to connect and Gage had water animals. I think they could have stayed in this room all day. This giant sink wrapped clear around three walls ending in the little pool where Gage was. It was awesome.

Across from the water area they had a baby moon walk. She of course wanted nothing to do with it. She wanted in the water too. Once I finally got the boys out of the water we moved on to an upper floor that had everything to do with the human body. This freaked Gage out and he could hardly stand being in there. So we moved it down to the 2nd floor. This room was huge and had giant blocks to build.

They had an air pressurized tube system that Gage thought was awesome. You load a ball in and it shoots it all through the tubes then out the top. Pretty cool.

Charlie really enjoyed playing with a ball coaster track.

Tinleigh enjoyed playing with the balls

and crawling through the hills.

There was so much to see here. It was a ton of learning fun!

The last thing we did was a bubble machine where you could actually put yourself in a bubble.

Oh the coolest thing I saw heard that day. Up in the human body rooms they had a pair of giant stethoscopes with buttons for different sounds. I got to hear what to listen for with asthma, bronchitis and pneumonia. I had heard them all before!

I was exhausted by the end of the day and still not feeling %100. Nathan and I decided to just stay in for the night and rent a movie for the kids. We fed them leftovers from previous meals and Nathan and I ordered room service. Kids fed, room service ordered, time for the movie. Nathan grabbed the remote and hit the movie button. Nothing happened. He turned it to the movie channel and tried to get into the movies again, nothing happened. Long story short, we saw the repair man twice and had signals sent to our box, even got a new remote. Still, no movie. Of course we couldn’t rent a movie. Why would a day end so smoothly? Luckily we had the portable dvd player and the boys just watched one on that.

We just laughed it off. What else can you do?

Day 4: Bowling home.

November 1, 2012 Posted by | LIVING | , , , , | Leave a comment

   

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