What is that?
How can it be so green?
Should I call the Doctor?!
IT’S FUN DIP!
Luckily Fun Dip is something Gage can have.
Now we have fun seeing what color comes in the tube after he eats it!
Who doesn’t love a burping tube surprise.
We found a new drink for Gage that’s similar to pop!
Actually, Gage’s Aunt Tina found a new drink for him!
Thank you Widipedia for helping me with information about this drink.
Ramune is widely known for the distinctive design of its bottle, often called Codd-neck bottles after the inventor, Hiram Codd. They are made of glass and sealed with a marble; the codd head is held in place by the pressure of the carbonation in the drink. To open the bottle, a device to push the marble inward is provided. The marble is pushed inside the neck of the bottle where it rattles around while drinking. The drinks are often called “mabu soda” in Japanese, for “marble soda”.
The original ramune flavor is lemon-lime. The word “ramune” is derived phonetically from the English “lemonade”.
This is the original lemonade flavor. It tastes slightly like sprite to me. Gage just LOVES it.
Including Original, there have been at least 35 flavors of ramune: Banana, Blueberry, Blue Hawaii, Bubble Gum, Cherry, Cola, Curry, Disco Dance, Grape, Green Apple, Kimchi, Kiwi, Lemonade, Lychee, Mango, Melon, Muscat, Octopus, Orange, Peach, Pineapple, Plum, Raspberry, Strawberry, Wasabi (available at Tokyu Hands), Watermelon, Green Tea, Chocolate, Vanilla, Root Beer, Candy, Bubble, Flaming, Sour, Sweet, Mystery & Yuzu.
We have only found the strawberry and original. I would love to find out the ingredients in these other flavors.
The first few days I let him drink as many as he wanted. I think he downed a 6 pack in 2 days. He’s down to about 1 a day now. I figured he would slow up.
One of the funny things is when we use his burping tube after having one of these drinks. The air that pours out of his tummy is unreal! Stinky too. We laugh about it. I am just shocked he’s not burping like a man after drinking this stuff!
Cheers to Gage and his safe new Japanese pop.
LOL Never thought I would ever be saying that.
Standing at my post in the kitchen I found myself questioning things and asking God why.
I’m going to type this out just as the questions flowed through my mind.
Why did You chose me to live this life?
Why did You chose me to be their mom?
Why did You create this horrid disease?
Why do kids have to go through such things?
What about those poor kids I read about with Epidermolysis Bullosa?
People with cancer and other life threatening disease?
Did You create such things so others have jobs to find cures?
Was it to give others a purpose in life.
I do believe everything happens for a reason.
Did You create disease like these to teach lessons?
What am I suppose to be learning from all of this?
Why are the little ones who live their lives fighting chosen to do so?
Or are they little angels sent here to teach us?
Have I messed up somewhere along the way and you’re now showing me how to live by your word, the right way?
When do I get a break?
Why does it just keep rolling my way?
Why do I sometimes feel as if I’m in a movie and the whole world is watching, just waiting to see me crack?
Is our family going to be the one that helps the doctors break through to finding the cause and cure for Eosinophilic diseases?
How does everything tie together?
What is the plan for us? For me?
Where is this path taking us?
Am I suppose to do something great as an advocate for EoE?
I keep searching for my next step beyond my blog but haven’t seen what to do.
When will I know my next step? Will I just continue as I am doing when my kids have kids?
Will I care for my grandchildren as I do my own because they will have this same disease?
Will they have it?
Will it be worse for them?
Please let there be a cure by then.
Or is this it?
You chose me for them because you knew I could do it?
You knew I wouldn’t give up?
I’ve not a selfish bone in my body. I would give anything for them.
Did you create me just to be here for them?
How does it all work?
Will I ever get to do the things I pictured myself doing?
Is it selfish of me to wonder such a thing?
I just want a pottery wheel and kiln.
Why does my family have to go through all of this and why can’t I just fix it?
Such a mean thing for all 3 of my kids to have to deal with their entire life.
Yes, Lord it could be much worse.
I do realize that, but, this is our life and what we deal with. It’s in our face everyday.
I know I shouldn’t complain but darn it I think I have a right.
We seem to have more downs that ups lately.
How about You give us a few good months this year.
We just need some uplifting. Well, I do anyways.
Of course You create kids to see the good until taught otherwise.
It just so happens you gave me great kids with big hearts and very positive spirits.
So maybe I should take from that and just keep going.
Continue to love them and stay positive.
Right back at where I started, with starting this blog.
To show others how when dealing with allergies, asthma, EoE and a feeding tube we keep on LIVING.
God, please continue guiding me and protecting my children.
Just my thoughts….
Let’s say you went to the grocery store and the only shredded cheese they had cost $6. Would you buy it? As an allergy parent spending that much on a bag of special cheese is normal. Spending that much more on an allergy free version of anything is normal. It’s a huge shock at first, especially to the bank account. You get use to it.
Tinleigh is dairy free, but can eat some of the things Gage couldn’t because she doesn’t have all the same allergies. This cheese happens to have pea protein in it, Gage is very allergic to pea.
I have known about this cheese for about a year. I have avoided buying it though because it costs $6. I didn’t want to buy it for a baby who may not like it. I finally bit the bullet. Tinleigh’s getting board with her meals. Time to venture into the world of fake cheese.
I first let her try it straight out of the bag and she loved it.
Then I warmed some up on a few crackers, still loved it.
Today we tried a grilled “cheese” sandwich.
Tinleigh can eat most any bread as long as it doesn’t have soy flour in it. We use Smart Balance light for her butter, dairy free. Then of course the $6 cheese.
First nibble wasn’t bad
Second nibble made me laugh
Then she tried to give it back
Nope! She was just kidding.
She didn’t eat a lot of it, but it’s another option I will try again!
She will eat the entire bag of $6 cheese.
We ventured out today.
I packed Gage’s next feed and some lunch for Tinleigh. I had a thermos of coffee.
Mind you it was 11 degrees and the wind was BLOWING.
We stuffed our huge coat bundled up selves in the car. I quickly learned that Tinleigh HATES wearing her snow boots. She had them kicked off in 2 minutes, maybe less.
A quick car ride and we arrive at our first stop. Apparently people don’t like to shop around here on cold days. We were one of 3 cars in the parking lot. I parked as close as I could and out we went. By the time we got inside Tinleigh was screaming. She did not like that cold wind one bit. I don’t blame her. She also managed to throw off one of her little mittens into the parking lot. So I dumped them in a cart while the check out girl talked to them so I could grab it really quick. Through the store and out we went. Gage begged me the entire time to go to the pet store next door. So we threw my purse and our bag in the car then turned and ran to the pet store. Again, Tinleigh was screaming. Poor baby. I need to figure out what people do with babies around here. Maybe the sign of no one being out was telling me I should just stay home. While in the pet store I witnessed what may have been the cutest thing ever. Tinleigh was watching a parrot. The parrot started watching her. Then the parrot heard the music playing in the store so he started dancing. Tinleigh noticed the parrot dancing and she started dancing. A-D-O-R-A-B-L-E.
We then went to meet daddy and check out his new office. By the time we were done it was time to hook up Gage and Tinleigh ate her lunch in the car. I was starving too. Typically I will just wait until I get home. I hate getting fast food anymore in front of the kids. Today though my stomach was growling like crazy. So I went through Wendy’s. I got a spicy chicken sandwich. We head home and I open up my sandwich. Gage asks “What smells so good?”. I told him it was my sandwich. He then asked what kind. I told him it was spicy chicken and it would be too hot for him. We discussed “spicy” for a little while and came to the conclusion he wouldn’t want anything spicy until he’s a grown up. He went on talking about how good my sandwich smelled. He sure did wish he could eat a sandwich. Then I had to put my sandwich away. He started telling me about what kind of sandwich he’s going to make when he’s allowed to eat food again. He’s not sure what kind of meat he’ll be allowed to have but he’s going to pile on tomatoe, lettuce, cheese, pickles then more cheese and pickles and make it super tall. He went on for 5 minutes talking about his fictional sandwich. It make me so sad. I can’t imagine being in his shoes. He has no control over what he’s fed. He takes his feedings like a champ. I can only imagine the thoughts going through his head when he watches us eating. He still wants to eat so bad. I know he felt like crap there at the end before he got the tube but he must have forgotten. I wish I could get a button too just so I could truly go through this with him.
Finally, Gage and his cousin Ellie got to see each other.
Ellie also has EoE. She had a n-tube placed in Sept. 2012. She got her g-tube at the beginning of December with in a week of Gage getting his. Ellie’s mommy and I kept telling them that their cousin had a button as well to try to make things “better”. Being that they’re 3 and 4 it was all just words to them.
Last night they finally got to see each other and show off their buttons! How exciting to have a tubie buddy close by! They even had a meal together. Stuck side by side most of the evening as well. I really hope they connect and have a wonderful bond growing up while going through the EoE battle together.
Last, but certainly not least, Charlie.
December was exciting for Charlie. Early in the month he went through some testing at school. His teacher saw a little something special in him. She liked how he thinks outside the box. He always gets everyone in the class thinking about lesson plans with his questions. He’s a leader. A public speaker. A salesman. Nathan and I agreed to let the school test his IQ. We didn’t get our hopes too high but were very excited to hear that he qualified for the gifted program his school offered. So very exciting. Something good bringing light to all the bad happening. Charlie would start attending the class in January. Since the first week of January is when we moved he only got to attend one class. That was a huge day for him. He was so excited he broke the record of attending the least amount of times. This cracked him up and he told everyone about the record he broke.
Before returning from Christmas break, we had to start it off with a bang. Actually a smack onto the ice with his head. We had some snow and ice the day before school got out. After the last day of school Charlie headed outside and decided he was going to learn to ice skate. I watched from the kitchen window and warned him he shouldn’t do it, he may fall and get hurt. Boys will be boys and Charlie didn’t listen.
I walked away from the window for 5 minutes and the next thing I knew he was knocking on our back door. I opened the door and could see blood dripping down his face from under his hat. He was slightly whimpering. I asked him if he knew he was bleeding. He said NO! So I scooted him in the door and told him to stay put. With no Nathan around to help I had to quick think who would I call?! Well, it just so happened I had a friend coming over to help me celebrate my birthday that night. I called her and asked if she could come a little early and watch Gage and Tinleigh for me. Of course she agreed and was heading our way instantly. I went back to Charlie and told him to start taking off his snow clothes. I then ever so gently picked up the edge of his hat. I still shiver thinking about it.
He split it wide open. I couldn’t believe he wasn’t screaming in pain. I wanted to cry for him. So I hid my “mom pain for him” and quickly got things ready for Jessica to come. Jessica arrived, I gave her quick instructions and out the door we headed. Upon arriving at the ER I let them know I had two hours before I had to be back home to hook my son up to his feeding tube. I also let them know he had just gotten it and I didn’t have anyone else who knew how to hook him up. I live literally right around the corner so it’s not like I needed to drive a half hour to cut into that two hours. Well, as time slipped away, we were approaching the 2 hour mark and we weren’t next in line. So I asked the woman at the desk if I could run home to hook Gage up. She informed me with a smile that if we left we would be out of line. I begged her and pleaded our story. She said that an ambulance was on its way in and everyone was going to be pushed back anyways. So with a heavy sigh I signed the release form and we left. An hour later we returned and signed back in. Three hours later I had to go feed Gage again. I approached the desk, again. By this time there was a second woman there. She told me that Charlie seemed like a really good kid and she wouldn’t mind if he just sat with her while I ran home. That way we wouldn’t loose our spot in line again. I don’t leave my kids ever!!!! Is it safe to leave him in a hospital with a stranger? YES! In this case it is. It just so happened that a boy from Charlie’s football team was there with his mom and little sister. So the boys sat together and colored. His mom also kept an eye on Charlie for me. I ran home and was back in 20 minutes. Charlie was an angle while I was gone. Still we sat and waited another hour. Then finally after waiting 7 hours his name was called. The doctor came in rather quickly and inspected Charlie’s wound. Yes he needed stitches. Charlie was scared to death. The second time the doctor came in to get started Charlie plastered himself to the bed with feet straight out so no one could get to him. The doctor looked at me and asked if knocking Charlie out would be a better idea. I asked if he was serious. He laughed and said yes. I said you bet! So quick change of plans and we were going to get this done. The nurse came in with her hand behind her back and walked over to the bed. Charlie asked what she was doing. She told him she needed to look at something. Next thing I knew she put him in a hold, the doctor grabbed the needle and jabbed Charlie’s arm. Charlie yelped and the nurse said this will be quick. I laughed and started talking to Charlie about Florida as he drifted off to sleep. It’s always creepy to watch your child fall asleep like that. I knew though it was for the best. I highly doubt he would have held still and let them numb that hole up with a needle. A quick 15 minutes later and the doctor was done. I had a very drowsy Charlie on my hands. We just had to get him awake enough to stand up and we could head out. Finally at a little after 2am we were out the door. Nine hours we spent at the ER for 9 stitches.
I felt horribly bad that I had invited Jessica over for fun evening and she ended up babysitting for me instead. I was just happy she was there for me. I’m not one to ever ask for help and when I finally did she came to my rescue.
Charlie ended up getting sick from the drugs and puked a few times. I put him in bed with me that night to keep a close eye on him. The next morning we discussed what happened after they jabbed him with that needle. He could tell me everything up to the point when his eyes when blank and could recall everything waking up as well. He told me my voice echoed and I had double everything on my face. He knew I was telling him about Florida. Everything! Sort of creepy if you ask me. It didn’t scare him though and that’s the biggest thing. I have to keep all hospital visits happy. A week later the stitches had to come out. Another scary trip. He was so fearful it would hurt. Much to his surprise it didn’t.
The doctor did an awesome job! He told me Charlie couldn’t have done a better job of where he split it. That scar will fade right in his eyebrow line as he grows older.
When you were 14 months old we scoped you for the first time to see if you had Eosinophilic Esophagitis. We had hopes from the beginning that being a girl you may be the lucky one and not have it. You also only tested positive to 3 foods, where as your brothers both tested positive to around 20 foods. This boosted our hopes a little more. So the week after your big brother Gage got his feeding tube, mommy took you to the hospital to have your first scope.
When your turn arrived mommy hugged and kissed you then handed you to the OR nurse. I then warned the nurse that you more than likely would wake up super cranky. Your big brothers never had any issues but I just knew you wouldn’t be very happy. As I nervously waited in the waiting room I knew you were in safe hands. Before I knew it I was being called to meet with the doctor. My hands were sweating and my heart was pounding. This was the big moment. As the doctor entered the little consult room she grimly smiled then said “I have never seen a 14 month old with an esophagus that bad”. I cried. Mommy cried for you Tinleigh. This horrible disease was in you too. I cried because no one knows what your future will be like. I also cried because I fear you won’t want to have your own babies giving them this horrible disease as well. Mommy also felt a huge feeling of exhaustion. It’s a lot for mommy to take on. You can bet the world though that I will always give my all to keep you as healthy, happy and as “normal” as I can.
The doctor and I spoke a while about everything. She was very comforting and sympathetic. She knows just how frustrating EoE is and having 4 people in our family with it, she knows what we face. I wiped my tears and went back out to the waiting room. No more crying, time to get on with it. I still had 45 minutes before I would get to see you. About 10 minutes later I was called to the desk. There was a phone call from the recovery room for me. OH NO!!! I was so scared to pick it up. The nurse on the other end sounded worn out. She asked if I had a bottle for you then asked that I bring it right up. She said you weren’t a happy camper. I chuckled to myself then got your bottle ready as fast as I could and headed up to see you. As the nurse opened the door to the recovery room I could hear YOU. I walk in and a few curtains down there was another nurse bug-eyed holding you and trying to do all she could to make you happy. Oh Tinleigh, you were giving them your everything. The nurse handed you off to me. You weren’t even happy to see me. We tried your bottle and you threw it. They said you hated your IV. We kept trying to put a sock over your little hand. With some babies that works because they can’t see it anymore. Not you. You knew that thing was still under there and kept ripping that sock right off. They even had to move your heart monitors to your back because you kept pulling them off. After about 15 minutes of mommy sweating, singing, bouncing, rocking and giving it her all you finally took a little tiny bottle of sugar-water from the nurse. We laid you on the little bed and you drank it all. As soon as it was gone you sat up, threw it and screamed for more. The nurse ran right over and got you another one. You drank that one too. Then, you were semi happy. We could now move you to the second recovery room. Upon arrival you gave all the nurses a huge smile and giggled. Tinleigh you sure do know how to play it up. Then they wheeled in a 12-year-old boy across from you and slightly pulled his curtain closed. You stood right up on your bed and bent over trying to peer around his curtain and waved to him. I could hear him saying hi back to you. Of course all the nurses laughed. Then you grabbed your tiny bottle and held it out as if you were offering it to him. You put on quite the show. You finally chugged your regular bottle and another little bottle. Finally, it was time to go home! We kept a little bottle as a souvenir. A month later it’s you number one favorite thing to drink from.
Tinleigh the following week your GI doctor called me herself. She was genuinely sad for us. She got right to the point and let me know that your mid eosinophil count was 70+ and your distal was 70+. You had a huge amount of inflammation which explained why you choked all the time. You choking all the time was mommies way of knowing in the back of her mind that you probably had it. It was why I wanted you scoped in the first place. There were striations all the way around and many clusters of very thick white eosinophils. Your esophagus was actually worse than Gage’s at his worst. At this point the doctor knew we were moving and wanted to make sure and tell me that she suggested we do some genetic testing at this point. Our family may have something a little more going on. We spoke about your diet and putting you on steroids. I knew the routine.
Images 4 and 5 show the striations and eosiniphil clusters. Not much room to swallow food there.
After hanging up with the doctor I had some choices to make for you. We already had you off of the 3 foods you tested positive to and the doctor suggested we also remove soy. You had been on soy formula since you were 6 months old because of your dairy allergy. I always had a slightly bad feeling about that formula. Since you didn’t have any outward reactions we thought it agreed with you, so we used it. The rest of the diet the doctor said was up to me. You were also off of all nuts and fish because typically in an allergy family you don’t introduce those foods to a child until they are 3 years old. I had never given you an egg yet so I decided to just keep it that way. You sometimes became gunky when eating bananas and beans so those went out. You always choked when eating potatoes, that wasn’t a hard decision. So your new food elimination diet included soy, apple, banana, chicken, dairy, all fish/shellfish, all tree nuts/nuts, eggs, beans, potatoes and we cut back on corn. For mommy it was like you took Gage’s place. Things got easier feeding him, but a lot harder feeding you.
Tinleigh I have no idea what this horrid disease has in store for you. I pray that by the time you are scoped 3 months later there will be much improvement if not back to zero eosinophils. If you are not better at the next scope I fear our road for you will automatically be the feeding tube. Because you don’t test positive to anything else and we have removed everything we know to take from you that leaves us with nothing else to do. Yes, we could remove wheat but mommy really has no idea what she would feed you. When Gage didn’t have wheat he had a few things going for him. He still had dairy in his diet and he had more teeth! Mommy doesn’t know how to keep you thriving and growing. Please don’t worry or fear though because I will try my hardest and do my best for you. That is my job as your mommy.
So on December 11th 2012 Tinleigh, you were diagnosed with eosinophilic esophagitis.
Just hold mommies hand and we will get through this together with your brothers and daddy.
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.
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.
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!!