Friday, March 29, 2013


This year, I was so sad that we "missed" radiothon. It is another yearly CMN even that we participate in. It is held at the hospital, where Mateo spent 71 days in the NICU, and where we frequent the pediatric unit. There are CMN reps, and radio personalities who spend 2 full days sharing what CMN is and what they do for families like ours. Miracle families stop in to visit, do live radio interviews, or record interviews to be played back on the radio. We have recorded interviews and every year we usually do a live one as well. I also like to give back by spending a few hours in the phone bank answering calls and taking donations.
Well this year, during the day off from work I took for Radiothon, we ended up at Doernbecher Childrens for Mateo's endoscopy. I was so sad that we couldn't help out this year, or even make an appearance. Well on the last day of radiothon, I was at work and the kids were with Aunt Tami.. She took them to the hospital, to Radiothon! Mateo made his appearance and even did his radio interview!! I am so thankful to my aunt for taking him, and for him for being do brave and sharin his story with out me!!                                         

Our new enemy, Mr. Milk

After getting Mateo's biopsy results and his EE dianosis,we were sent to the lab for a blood draw to check for food allergies. It's pretty sad when a 4 year old holds his arm out to be poked. He didnt even scream or freak out. He is getting used to it. :(

We waited close to a week and I got another mychart message from the GI,Dr. Terry. She said he only tested allergic to one thing, and it was indeed milk. I really was hoping, crossing fingers and toes, praying, begging for it to not be milk.

This is a HUGE change for us. He is very, EXTREMELY limited to what he can eat at restaurants now. And at home, I'm having to relearn to grocery shop, spending more money, and learning how to prepare meals for him. It breaks my heart that I have to limit him so much. But after researching, asking friends, shopping.. I have found some good stuff... So far I've made dairy free pancakes ( bisquick with egg and soy milk), got him dairy free bread, margarine, soy yogurt, vegan cheese, dairy free snacks... It's been crazy. He can't have simple things like a lunchable anymore. The meat, cheese and crackers ALL have dairy... Chips have milk in them... But tonight he was a happy camper. He made his very own pizza, gluten free/dairy free crust, vegan cheese and black olive. He ate half of the pizza.. And he said it was good! :) It's going to take us both some time, but we'll get it figured out!

The hardest thing for me is how I don't have complete control over Mateo's diet. He goes to my aunts house during the day while I work ( along with his sister Aneli). I worry that he might accidentally get given or fed something with Dairy. Or when he goes with grandma. Grandma's like to spoil their grandkids, and she has been known to sneak him some sugar once in a while... I wish everyone would take his conditions seriously. It' s not like we limit or restrict him for fun... It's for a purpose, his health!! It's frustrating when people give him things he's not supposed to have. Then he knows what he's missing, he expects it again, or worse, it causes issues with his health and/or comfort. Then it affects his sister and myself...

This diagnosis has really hit us all by suprise, and it's very stressful now. I look forward to the day that it just clicks, and we "get it". I remember the day I heard "hirschsprungs disease"... I thought we'd never be able to deal with it, and here we are! I know we can do this too,I just hope its smooth!

Wednesday, March 13, 2013

Biopsy Results

So, we got Mateo's endoscopy/biopsy results back. Here is the email I got via Mychart from his gastroenterologist, Dr. Annie Terry.

Hi Kayla-
Mateo's biopsies confirm that he has eosinophilic ( allergic) esophagitis. This problem is caused by a reaction to foods.Kids with this problem have reactions to foods that may only show up as inflammation in the esophagus. Some have symptoms that look like acid reflux.

Unfortunately, for many kids with this problem, the normal blood and skin tests for allergies are negative, making it difficult to find the food or foods that are the cause of the problem. In his case, I wonder whether it is the milk protein in his Pediasure Sidekicks. The treatment for this problem is to either eliminate the foods from the diet that are causing the problem or give a steroid medication by mouth to coat the esophagus. Many centers start by eliminating the 6 most common foods that cause these allergies-- milk, soy, egg, wheat, peanut, fish.

Since his bleeding problem seemed to start soon after adding the Pediasure, one option for Mateo would be to just remove dairy from his diet ( pediasure, milk, cheese, ice cream, yogurt) and let him drink regular Neocate again. I would suggest that we schedule another endoscopy in 6 weeks to see whether removing only dairy from his diet is enough to treat this problem.
Annie Terry

When I spoke to Dr Terry over the phone, she told me that this is a huge problem with kids with Short Bowel Syndrome, and Mateo's allergy is a good one, whatever it may be. She said they would normally see 15 cells in a slide, they saw over 100 in the areas on the bottom of the esophagus on Mateo's biopsy. She told me that we are still years away from an accurate test that would confirm if we had removed the right food(s) from his diet, so all we can do is a blood allergy test( which above she stated usually comes back negative), and start removing foods one by one. She is scheduling the blood tests and Doernbecher scheduling will be calling me to set up another endoscopy for 6 weeks out, to check and see if the esophagus looks any better.
I'm sensing a very long, stressful, frustrating road ahead...

Monday, March 11, 2013

UofO Dance Marathon 2013

For the past few years Mateo being such a miracle and all, has participated in the Dance Marathon. It is held at the University of Oregon, and tons of college students and miracle families all get together and dance for 12 hours to benefit CMN.
Every year, we go as a family to show our support and to share Mateo's miracle story. We talk about my pregnancy, and how we thought everything was perfectly normal. Then we tell how Mateo was born, and diagnosed with Hirschsprungs Disease and Short Bowel Syndrome. We share our daily struggles and all the obstacles Mateo has overcome over the years.

This gives the people dancing more of a reason to keep dancing, and to keep fundraising for CMN, and it helps the people who donate to really see where and how the funds they give are being used. We are so very proud to be a part of Dance Marathon and we hope to go for many more years!!

I-5 N we go...

The other day, we were going about our normal routine to get ready for the day. Mateo's ostomy bag was leaking, so we did a change before we headed off to school. I get the new pouch on and Mateo says, " look mom, blood's coming out!". I look and much to my suprise, there is nothing but blood in his bag. Not a huge amount, but scary nonetheless. I call his pediatrician, who asks me to bring him in right away. I take him in and she doesn't know what to do. She makes a few calls ( one to our peds surgeon, and one to Mateo's gastroenterologist up at Doernbecher Childrens in Portland). She comes back in the room and says, " I hate to tell you this, but they want to see him in Portland." So, we get the call and make an appointment for the following day. We get up at 430am, pile in and head to the hospital. We see Dr. Terry, who does and external exam and says Mateo looks like he's lost a good amount of blood. She orders the dietian to come meet with us, and a blood draw. The labs came back good enough to send us home, but she wanted to do a scope to see what was causing the bleeding. We go home for 2 days, then it was back to Doernbecher. This time we see a different gastro, and it's in the surgery dept. Mateo is put under, and a camera was put down his throat and one in his stoma. During the procedure, unknown to us, he had quit breathing twice and had to be intubated. Otherwise the endoscopy went well, we are still awaiting results. She did tell us that they found an "abnormality" in his esophagus that she biopsied. The bleeding has stopped, but we still don't know what caused it in the first place. So for now, we are taking it day by day and awaiting the results from the endoscopy, which should take about a week. Til then, we keep our fingers crossed and pray that it's nothing serious.

CMNH Champion trip 2012

WOW, is all I can say. So being Childrens Miracle Network Champion for the state of Oregon definitely has it's perks. On Sept 16th, we flew out of Eugene headed East. It was Mateo and Aneli's first airplane ride, and what a ride it was. We flew all the way to Washington, DC. 
Once in DC, We were welcomed at the airport by media, balloons, clapping, cheering! It was incredible! we stayed in an amazing hotel, and we did lots of crazy stuff! We met celebrities: Country music singer Mark Wills, Miss America, and tons of Congressmen! We went to the National Space Museum, and the place closed down, just for us miracle families!! It was incredible! We had lunch on capitol hill, saw the Grant Statue, went to the National Aquarium, and believe it or not, we toured the WHITE HOUSE! Yes, the WHITE HOUSE! Just when you think it couldn't possibly get any better, we met..... BO, the first DOG! HAHA, we really did, but we also met his owner, President Barack Obama!!! Such an incredible experience to have walked freely through the White House, sat in the East Room and had the President of the United States stroll in and talk with us! He high fived me, Carlos, and Mateo, and he gave  baby Aneli a fist bump!! ( LOL). From the white house, we boarded a Delta charter plane ( a HUGE plane for just us miracle families!) and headed to Orlando, Florida to Walt Disney World!! As we left the airport, there were firetrucks spraying water over the plane! We got first class treatment, everything from water, blankets,  headsets, tvs, and food! We arrived in Orlando and boarded charter buses to our Resort, Coronado Springs. We once again had a welcome party! There were so many people all cheering for us, it felt like we were celebrities! Mateo was in 7th heaven! He loved all the attention!! HE truly was famous!!
The next day, we headed out early to Disney World, where we did a live radio interview on KPNW with Mark Wills. We had all day at the parks, we did Disney World, then Epcot. We had VIP passes to the Parades, one being " Celebrate a Dream Come True".  While in Orlando, we had a pin exchange, we all sat in room and Mateo along with the other champions, gave out their signature in exchange for a pin. After the pin exchange we had a metal ceremony where Mateo was awarded a metal for his courage, bravery and strength and for being a CHAMPION! Here we met Nick Cannon and Jordin Sparks! Nick was the emcee and Jordin performed and danced on stage with all the champion kids!! I don't want to leave out that Mateo met and took pictures with Mickey, Minnie, Donald, Goofy and Pluto as well!! :)
This trip was truly amazing, and Mateo still talks about it. But what he talks about most is the friendships he made on the trip! Mateo was surrounded by other champions who were different, but like him. He felt comfortable showing his "bolsa" and letting the kids know he has Hirschsprungs Disease. He misses his friends from the trip, and we hope to reunite with them this fall. :)
Thank you CMNH for choosing Mateo to be Oregon's Childrens Miracle Network Champion for the State of Oregon!