Fun on the Homefront

We can't forget that while Pop, Kyler and I were away fun stuff was going on at home! Here is a sum up of the happenings on the homefront . . .

A Razorback baseball game . .

Chowing down on some Mexican food. . .

Cool Dude. . . Jayden had his first 2 baseball games while we were away . . .

Where are Jayden and Evan????

Some bike riding. . .


And I know that alot more exciting things happened and that CiCi kept them super busy and filled with good food!--just don't have any pics of that action!

We have a PLAN!

Today, we had our follow-up appointment with Dr. Franciosi. The biopsy showed what we already knew, he is "actively in the disease" is what he said, that sounds kinda bad, but just means that his esophogus is inflamed with strictures and rings (damange from the allergic reaction) and that his Eosinophil count was near 60 per high powered field. The Eosinophil count was way more than it has been in previous biopsies.
Here's the Plan:
(1)Remove SOY and RICE in addition to the other foods he has been restricting (milk, egg, nuts, beef, pork and oat). Supplement with an amino acid formula (because he will need the additional calories/vitamins, etc) and at the end of 12 weeks . . .rescope . . .in Cincinnati.
IF the scope comes back clear (fingers crossed!) we can assume it was rice and soy and can gradually add back some of the other foods we had previously removed from diet (scoping after each).
IF there are still Eosinophils, we additional remove the 8 primary foods . . . rescope . . . you get the picture.

Another option in the future is to use steroids to correct the inflamation, but I want to find out what's causing it! I just can't see giving my child something he's allergic to and then correcting it with steroids.

He still has the Allergy appt tomorrow, so if something comes back on the patch test we will additionally remove that.

THIS IS GOOD . . .WE CAN DO THIS! It's much better than having to take him off of all foods and only on the formula!

Remember when Kyler was a 4 month old baby and he broke out in hives, vomited and was lethargic for 3 hours after eating his first RICE feeding mixed with a little formula . . poor thing was being feed TWO things he was allergic to!

This is what the patches look like, we got to take them off today and they will read them in the morning.

We went to the Children's Museum and Kyler got to play. We also saw the IMAX show "under the sea".

Pop even played a little, he built the arch!

We topped it off with our best meal yet (not much competition - McDonalds and Hospital food!) --We sat by the River at Joe's Crab Shack!yum!

Looks like we might become Cincinnati regulars! The future appts. will not be this intensive, just have to come for the scope procedure and then return home.

Friday's Schedule: 9:00 appt. with Allergist/patch test reading. Then we will meet with the Dietitian. I think we will get some samples of the formula so he can decide which one taste best to him --they are $45 per DAY and don't taste good -- that just doesn't seem right! THEN --- We Head Home!! Arkansas here we come:)!

Some Learnin' and Some Fun . . .

*****I need to correct a little something from yesterdays post -- I said that they saw "45" EE kids a week and meant to put "4 to 5" per week -- oops, big difference!*******

Today I spent the morning in a seminar with the head of research in the EE department -- he was the one that started the clinic team. . .it was very informative and I got a lot of information. It was just me and one other mother and her 11 year old son, it was interesting to hear what he had been going through as well. People come from all countries to this clinic and they schedule 4 new patients per week. We also learned the biology of the disease, treatments, research, etc. What kept being repeated over and over is that this is "chronic disease" and they compared it to diabetes - in that you get it under control but it is always there. The good news is that once you figure out what treatment works and get it managed you can have no symptoms.

Pop and Kyler picked me up after lunch and we headed to Kings Island Amusement Park . . . IT WAS CLOSED! That's okay, because we just headed to the Aquarium and spent the afternoon there. It was alot of fun!


The sharks swimming over Kyler . . .

Hangin' with the Jellies (from "Finding Nemo"--hah!)

Kyler was trying to get one of the birds to land on him . . .

some sea turtles. . .

Pop and Kyler touching a sting ray . . .

Kyler compared to a shark . . .

ooohh, a shark!

checking out the River outside the Aquarium . . .

A big surprise from Aunti M and Uncle JA was waiting in the room when we returned!

Eating some speghetti . . CiCi packed a ton of "kyler safe" food for the trip and he has been chowing down!

Thursday's Schedule: Tomorrow's the day folks . . .we meet with the GI Doc for follow-up at 9:30 and get the treatment plan /biopy results will be reviewed, too. (It could be tweeked a little after the patches get read on Friday)

The puzzle pieces are coming together. . . and some fun was had!

Remember when I said that Sunday and Monday would be his hardest days. . . lets add Tuesday morning to that! We were in the Allergy dept for almost 4 hours this morning . .(that's not the bad part). . . Dr. Abania was in with us getting a history for a large portion of the morning and things from birth til now are all "typical of EE kids" --typical . . haven't heard that in a drs. office with Kyler! He said he sees 4 to 5 EE kids a week! WOW! I feel things coming together, now.
The bad part: First, I would like to say that Kyler has had MANY skin prick tests, with no problems - usually he just sits there -- HE FREAKED OUT! I mean screamed, ran in the corner, refused to do anything, it took 2 nurses and me to HOLD him down while they put 75 pricks on his arms! And then we had to hold him for the 20 minutes while we waited on the results! I think that the stress of the last few days just came to a head today and he had all he could take! He was perfectly fine after he calmed down and it was over.
(((this picture is before the "freakout", he was great while I was talking to the Dr --today he watched "Night at the Museum"))))



This is him getting his patch tests. I will have to put a picture of the full thing before we take it off. It's kinda cool, they put babyfood of all these different foods in the stickers.
After our stressful morning it was time for some fun! First stop, the ZOO!

Kyler and Pop

Kyler and his monky suvenier he got.

Me and Kyler on the train. ..please ignore the 3 gigantic cold sores on my lip . . we can just remember that Mommy was under some STRESS during this time:)

Check out the Polar Bear in the background!

Then we went to the Cincinnati Reds game!

I am glad we finally got to work in some fun today, and boy did he need it! We also worked in a little trip to Toys R Us in there somewhere! Thank goodness we have Pop to get us everywhere we need to be and do all our little duties for us:)!

What did we learn today? Kyler tested postive to two new things on the skin prick test RICE and lamb. We will see what this means later on in the week. I also learned that random hives/allergic reactions are "typical" of EE kids . . didn't know that, and Kyler has those . . again, puzzle pieces fitting together. Even though he has had the EE diagnosis since he was 2, the fact that we are fixing to do something about it and that his symptoms are like that of other kids, is nice to know. AND I like knowing that the GI doctor and the Allergist and the rest of the team are going to meet and put their minds together for treatment!

Wednesday's Schedule: 9:45 I have a seminar and tour of the lab---that's it! Kyler gets a break tomorrow-- and boy does he need it! I am going to take the shuttle from the hotel and Pop and Kyler are going relax and do whatever until I am through!

Trying to get to the FUN stuff . . .

Monday is done! yay! We started off bright and early, this was Kyler's position the entire time I was talking to Dr. Franciosi. . . Thank You CiCi for the itouch--G-Force was a hit! I have talked to what I feel like is a whole team of docs already and it's only day 1! After we met with Dr. F we met with the Dietician and will meet with both of them again at the end of the week. Then, we met with someone with the research study --Kyler's symptoms qualify him to be in the study, so we signed the papers so his results can be used for research as well(no money involved, but should help others in the future!) She said that they are hoping to one day be able to diagnose EE without needing biopsies . . .and just be a simple test and Kyler could be a part of them figuring that out!

The Dexa Scan was no biggy, just took a really cool full body xray scan -- we will get the results of that later in the week.

We went to guest services, they switched our hotel for us (we will be "moving" on Tuesday), we found out about attractions, and they gave him a Cincinnati Teddybear . . .



This is Kyler getting ready to be wheeled to OR -- yes, he's watching "G-Force" again. I got to be in the OR with him until he was completely asleep. I held the iphone in front of him while he drifted off to lala land.

This is post-op, eating popsicles of course! He took a while to wake up, he was sleeping sooo hard . . but when he woke up he was ready to get something in his tummy!

more in the tummy . . .

and still MORE in the tummy! Hey, the boy hasn't eaten solid food since SATURDAY! He requested Dominos, and Pop found one!

What did we find out? Not much really, I did get to talk with the doc after the scopes. . . he showed me the pictures he took (pretty cool, I can see this being a share time thing. . . Mrs. Curtis, watch out for some cool pics come next Monday morning!) He said he could tell by looking that the esophogus is "actively inflammed" and that we would be looking at treatment options for that (again . . .end of the week), he also said that the intestines looked okay to him, but they did take biopsies of that as well. We will see what the rest of the week brings us. . . we will be starting some FUN tomorrow!

Tuesday's Schedule: 9:00 Allergy Appt, Skin patch testing to be administered after that, and a 1:00 meeting with a Social Worker. . .then we are free to roam Cincinnati!

Cincinnati Here We Are!

The Number 1 thing I have learned thus far on our trip: I was NEVER meant to be a nurse! (too bad, it's one of those sub-jobs under the title of "mom"!) . . . okay 1 more thing I learned. . .it is very difficult to force a stubborn, strong willed child to drink icky tasting medicine for 3 hours ---and will involve some serious negotiating skills!

Here's how our first 2 days have gone. . . We are traveling McDonald's to McDonald's in search of all 4 of the Battleforce Five Happy Meal toys. . .

After traveling through the middle of St. Louis (like ghetto--yes the GPS has redeemed itself since then) we DID have some luck at a McDonald's . . .

And we topped off Saturday night with a swim . . .

And started Sunday morning off with another Mcy D's success . . .

Ate an icee (since that is ALL the poor child can eat --"clear liquids"). . .

Enjoyed some rest time in the car, while poor Pop drove in the pouring rain and traffic . . .

Arrived in Cincinnati! and of course, hit the pool . . . .

I will spare you the details of the surgery prep . . .Kyler has been a trooper. . . and it only cost me a trip to walmart for a toy , 20 bucks from me and 20 bucks from Pop to get that liquid down! At one point he offered to do the enema for 100 bucks. . smart boy, might have been tempted to pay it, except he had to do 4!

I kept saying Sunday and Monday would be our most difficult days, so, just tomorrow to go! (Actually, today, I am posting this at 1:30 Arkansas time --that's 2:30 Cincinnati time!!!! uggghh-- I need to sleep!)

Monday's Schedule: GI Doctor appt at 8:30, Dexa Scan at 10:00 and Scopes at 1:30.

2nd Grade Fieldtrip

I know, not the best picture- but the only one I have! This of Jayden and his friend Nick before the play started. Kerry and I played split duty with Jayden's fieldtrip on Thursday. I met the class at the Theater of the Ozarks and watched the play "Ananse" with all the 2nd graders! Kerry was on icechest duty and met the class at the park with their lunches and then watched them play! Jayden was worn out by the time he got home, all that fun is hard work!