The Budesonide Study - The Home Stretch

Hunter had his second endoscopy as part of the research study this morning. Visually, everything looked PERFECT!!! We do need to wait until the biopsies come back from pathology to be sure nothing is found there. Although a visual scope is a good sign, often times, the biopsies will still show eosinophils, so we need to wait and see. We should have details by the middle of next week.

Everything went well overall. I was a little disappointed about one thing though....Hunter HATES the "stinky mask," (general anesthesia), so we give him versed before the procedure so he's out of it enough to not even realize he's getting the mask. It saves us ALL a lot of stress. I promised him we would do this again. They say it's supposed to work in about 10 minutes or so, but for Hunter it doesn't seem to work for closer to 30 minutes.

Well, today, they were way behind. He was supposed to have the procedure at 7:30am. At 7:15, I mentioned again that he needed the versed and that it takes about 1/2 hour for him to get relaxed enough with it. By the time the nurse came with it, it was already about 7:30. She seemed very rushed and quickly squirt it in his mouth, so some spilled down his chin, then rushed out again. They waited about 10 minutes and took us back. He was a little "floppy" but certainly not "out of it." I'm mad at myself for not speaking up. I usually do in situations like this, but I felt so rushed and just froze and didn't say anything. Hunter was still very coherent and fought the mask.

When we got home, Hunter kept asking me over and over why they gave him the mask...that they were supposed to make sure the "special medicine" (versed) would help him. He remembered every little part about being in that room, what people said in there, and getting the mask. He was upset that they did that after we all promised it wouldn't go that way. I felt really bad, like I let him down. I learned my lesson from it though and will be sure to speak up for him next time, no matter how minor it may seem to us. I know it's a big deal for him and this is the least we can do for him with all that he has to go through.

Originally, Hunter was also supposed to have an IV in all day with frequent blood draws as part of the study. We received a very welcome call a week or so ago, saying that they reached their quota of how many people had to go through this step, so Hunter no longer needed to do it. Woohoo!

We now taper down the medicine, just once per day for the next week, then 1/2 dose 1x/day for the next two weeks, then we're finished.

National Jewish and The Children's Hospital in Denver, CO - just two weeks away!

Our flights are booked. I'm taking the kids by myself this year. We leave on Wednesday, June 24th and return on Saturday, June 27th, so it'll be much shorter and easier this year.

We have back to back appointments on Thursday at National Jewish (NJ) from 9am-5:30pm with an hour and fifteen minute lunch break. We'll do a bunch of allergy testing for all three kids, meet with the allergist and the GI...times this by 3 and it takes all day long.

On Friday, we head over to The Children's Hospital (TCH) for upper endoscopies for both Kaleigh and Tanner. That's going to be a rough day as they're scheduled at 2pm and 2:45 respectively with no solid foods for 8 hours prior and no liquids for 3 hours prior. We'll then have the afternoon to rest and take it easy. We leave back home to Phoenix the following day around noon.

Hunter will be having an endoscopy here locally next week as part of the research study. I'm excited to see how that goes and if there's any difference in the number of eosinophils from his last scope 3 months ago.

Link to an article about a girl who has EGID

http://www.montereyherald.com/local/ci_12539968

The Budesonide Study (Appointment #4...I think)

Hunter had his easiest appointment yet today. This one did NOT require a blood draw...yippee!!! It was just vitals and quick exam/symptom check by the doctor. He has been having undigested food in his stool (I'm getting pretty good at all these medical terms, aren't I?!) quite a bit lately but it's hard to tell if it's something viral or what. Overall, he is still doing very well...happy and full of energy. He was so nervous though, asking every single person we came in contact with if they had needles and if they were going to poke him today. :(

In three weeks, he'll have another endoscopy to check for eosinophils again. This will be interesting to see if they're still there or have gone away since the one he had done at the beginning of the study. They will also be combining his "big appointment" on this day, so he only has to have the IV put in once. We will stay at the hospital all day (endoscopy time plus 9 hours for the study visit) and have blood draws every hour (or two?) After this, I believe there will only be one more appointment a few weeks later to conclude the study.

So Far, Soy Good

Tanner and Kaleigh have been doing very good overall on soy. They've been getting the bulk of it from edamame. They love popping them out of the pod and eat them hot or cold. They both have had some minor choking/gagging since starting it, but nothing bad enough to warrant removing it from their diet without knowing for sure. We'll wait and see what the biopsies show. If they're bad, we'll know that this was probably a symptom. If not, it was a fluke. They have no other symptoms at all though!

National Eosinophil Awareness Week

Today marks the first day of National Eosinophil Awareness Week. Beginning last year, and every year going forward, the third week in May is dedicated to spreading awareness and education about eosinophilic disorders.

The following video was created by an Arizona mom who has a child with EE. She spent hundreds of hours planning, shooting, editing, and copying, all for the purpose of spreading awareness as well as educating the public, and hopefully helping in fundraising efforts as well. She is an amateur, but you'd never know it watching it. I think she did a phenomenal job putting it all together.

Along with many other Arizona families, Kaleigh, Hunter, and I all participated. Please take a few minutes to watch if you haven't seen this yet, and feel free to pass on the link to others as well.

I'm having trouble loading the actual video but if you search under "Life Without Food" on youtube, you should be able to view it.

A conversation between Tanner and I the other day

Tanner (very serious): "Mom, can we stay up late tonight?"

Me: " I'm going to be gone all day tomorrow, so you can ask dad since he'll be the one dealing with you tomorrow."

Tanner (laughing hysterically): "YES! Dads always say yes to stuff like this cuz they don't really know how to take care of kids or anything!"