Saturday, June 20, 2009

Blitz It Friday--Big Project Part 3

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It was a busy week around here, some extra appointments and very few overlapping naps. Therefore, I'm sad to report I did not work on my big project. I did manage a 15 minute blitz yesterday to pick up toys in my living room. And for your viewing pleasure I have "before" photos:{Ugh, I have no end of frustration trying to get my photos on here and where I want them, I give up!} Anyway, the second picture is my foyer table. You can see the three baskets, on the left is yet to be sorted, the middle is for recycling and the basket on the right is the "to file" pile that I'm supposed to be working on. You can see the closeup of that basket in the top picture. The pile of junk on the far left of the picture also needs to be sorted. So now you can see what I'm working with and why it feels like I'm emptying the ocean with a spoon. ;-)

My goal for the coming week, again, is to spend at least 30 minutes filing the papers in the "to file" basket. Thanks for hanging with me even though I'm always a day late and a dollar short! For more blitzing, go to Organized Everyday.

Monday, June 15, 2009

Blitz It Friday--Big Project Part 2

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Once again I'm late to the party. It took me till Saturday just to do my blitz then another two days to write about it. In the words of my cousin, a new mom, "Motherhood is busy." Here's what I accomplished last week.

Big Project
So my project is my foyer table and my goal was to spend 30 minutes going through the paper crap. Saturday, I gathered the "to file" basket, my new manila folders, and a stapler and sprawled out on the living room floor while the kids slept and hubby worked. Because my filing cabinet is a project in and of itself, I just made new folders for all the different topics as they came up. I went about 15 minutes past the timer for a 45 minute blitz. It felt like I was trying to empty the ocean with a teaspoon. I'm so aggravated that my house is a disaster area and I have no time to deal with it.

This is a busy week ahead, but I will try to do another 30 minute blitz. Also, I'll try to upload my "before" picture.

Weekly Blitz
Sunday morning I blitzed my kitchen table for 25 minutes. And I didn't even finish, that's how messy it was! I need a new system, everything gets dumped there. I managed to get through all but two pieces of mail, made a much smaller paper pile, and wiped down the surface.

For more blitzes, check out Organized Everyday.

Friday, June 12, 2009

Big Birthday Bash

So Diaper Diaries is having a birthday bash where we get to link up and tell you about our favorite charities. What a great idea! Well, you could probably guess that as mom to a kid with Eosinophilic Esophagitis, I'm gonna point you to APFED--the American Partnership for Eosinophilic Disorders.

Their mission statement:
"American Partnership for Eosinophilic Disorders (APFED) is a non-profit organization dedicated to patients and their families coping with eosinophilic disorders. APFED strives to expand education, create awareness, and support research while promoting advocacy among its members."

What they do:
"Create a credible source of information for physicians and patients.
Reach out, find and support those who feel alone with their pain (patients and families).
Unite the physician and patient communities in an effort to empower both sides with a better understanding of one another.
Teach the general public to understand what 'eosinophilic' means to affected families.
Promote and support research into the cause and cure of eosinophilic disorders."

What the heck is EE?
"Eosinophilic esophagitis (EE) is an allergic inflammatory disease characterized by elevated eosinophils in the esophagus. EE is a newly recognized disease that over the past decade has been increasingly diagnosed in children and adults.... Eosinophilic esophagitis is characterized by a large number of eosinophils and inflammation in the esophagus (the tube connecting the mouth to the stomach). These eosinophils persist despite treatment with acid blocking medicines.... In certain families, there may be an inherited (genetic) tendency. In individuals with EE, the eosinophils cause injury to the tissue in the esophagus. EE can be driven by food allergy or intolerance: most patients who eliminate food proteins from their diet (by drinking only an amino-acid based formula) improve."

You can read L's EE story here. Even if you are like me and don't have the money to donate right now, I hope you will go to and learn more about this strange illness and spread the word to anyone you know whose kids are having mysterious GI symptoms that no one can figure out. The only way to diagnose an EGID is by biopsy during endoscopy.

Two of my other favorite charities:
Phoenix Children's Hospital. They literally saved L's life.
March of Dimes

To read about others' favorite charities, check out the Big Birthday Bash at Diaper Diaries.

At Long Last....L's Story

I apologize that up until now I have talked bits and pieces about our life with EE without writing a good background post on how we got here and where we are. So without further ado, the short version of L's story.

L was born a month early at 35 weeks and 3 days gestation--so just a little pre-term. He had, we were told, "typical preemie problems"--hypoglycemia, difficulty maintaining his temperature, suck-swallow-breathe problems, and then jaundice, so he was in the NICU for 5 days. He was an unhappy colicky baby, but he ate well (almost exclusively breastfed after being supplemented with formula while in NICU), didn't spit up much, just cried a lot. We thought the colic passed when he was 4 months old. He had a quieter two weeks or so, then got fussy again. We attributed it to teething. He spat up more and had some diarrhea, but thought it was teething and all the extra drool.

At 6 months old, he had several episodes of screaming followed by vomiting. His pediatrician saw him twice during this 10-day stretch and called it a stomach virus. "Don't worry unless the vomit is green (bile) or projectile." Then on Dec. 30, 2005, in the evening hours he started screaming again. This time we knew what was coming--scream scream scream and vomit. When he finally threw up, it shot 3 feet in front of him and was distinctly green. We headed to the ER and I put the white towel with green vomit on it into my backpack, determined to be taken seriously, this was no stomach bug.

We headed to our favorite hospital at the time, SHS. When we were in triage we were describing the vomiting and the nurses asked, "Is he always this pale?" We said "yes, that's his normal skin color, he's very white." We were always getting compliments on his porcelain skin. Little did we know....

The doctors cared little about the vomiting. They were concerned he was so pale and then with how difficult it was to get blood. It took several people and pricks and a loooong time to get enough blood to send to the lab. At some point I nervously chuckled, "well he must have some blood somewhere because he's alive." I'll cut to the chase, it was horrible and several hours and lots of waiting until finally a doctor told us what he thought was happening--he thought L was very anemic and if the numbers are as bad as he thinks, we'll need to go to Children's Hospital for transfusions.

In the end, he had a hemoglobin of 3. As it was described to me, 13 is normal, 9 gets you a blood transfusion, 6 you're in so much pain you can't move, and L was at a 3! Anemia has nothing to do with skin color (L is very white), but cheeks should be rosy and lips should be red. I had noticed L's "cute" pale pink lips weeks before, but I didn't know that was a bad thing. :-(

With an IV sticking out of his head, L and I were taken by ambulance to Phoenix Children's Hospital (PCH). The paramedic riding with us summed up the situation better than most that night. Blood transfusions will fix the anemia, he said, and he'll be fine. The tough part will be figuring out how he became anemic in the first place. He was pretty much dead on.

Hubby followed behind us in our van. We checked into the Pediatric ICU (PICU) and it was a long night of doctors and tests and I don't remember what all, and then he started having the transfusions. He was in the PICU two nights, then moved up to the hem-onc (hematology/oncology) floor for one more night.

He came home a new kid, happy, energetic. But he still had these screaming vomiting episodes. After about a month, the hematologist declared that GI must be the root of the problem and we started seeing our gastroenterologist. We also got a new pediatrician since clearly our first one was a total idiot--we'd been in her office twice while L's hemoglobin was critically low and she had no clue! I can't remember everything we did, lots of tests, at one point the docs suspected Meckel's Diverticulum and he had a nuclear medicine scan--awful. Then they did upper and lower endoscopies. After the procedure, the GI pointed to a picture of his colon and said it looked like allergic colitis. Since I was breastfeeding, she suggested I take dairy and beef out of my diet. After 10 days without dairy or beef (wow, that was tough!) we got The Call.

The diagnosis was Eosinophilic Esophagitis. The theory was that L was allergic to foods in my diet, probably milk protein, and eosinophils were attacking L's esophagus and he was bleeding microscopically for months, not visible in his poop. I had to wean him immediately and put him on a special formula (Neocate, an amino-acid-based medical food), that was his only food for 6 weeks, they then scoped him again and the number of eosinophils was greatly reduced, the treatment was working! At this point, L started sleeping better and was a happy kid without screaming vomiting episodes. We started seeing an allergist as well and doing food trials to see if he had safe foods. Allergy prick testing showed no allergies (his is not a histamine reaction, no hives or anything), patch testing revealed allergies to corn, wheat and soy. Milk and eggs came up negative but we were still to avoid those. Food trials picked up blood in his poop for green beans, strawberries, blueberries, oats, chicken, turkey and a bunch of other foods.

I should add that we were fortunate that L would drink the Neocate from bottles, he has never (knock on wood) needed a feeding tube, as is often the case for kids like L who can eat so few foods and need so much formula.

Where we are now:
L has 13 approved foods including most recently his first proteins, beef and eggs. He still needs the formula for all his nutrition--he drinks, from bottles (yes, he's nearly 4 years old), about 42 ounces of Neocate Jr. per day, mixed with a couple ounces of orange Pedialyte for flavor (I'll spare you that long story). He is a very picky eater (of the 13 approved foods, he eats about 8) with a strong gag reflex. We sit him down for 3 meals a day, but he eats so little and mostly fruits and vegetables, that it doesn't make much dent in the calories and nutrition he needs. We are on a waiting list to start feeding therapy to help introduce more foods and textures and to move him off the bottle.

Otherwise, he's a very healthy kid--99th percentile in height and at his last checkup 90th percentile in weight--woohoo!--prompting his GI to finally let us try to move him off the bottle, since 42 oz a day is way more than necessary. Yea!

So he's a healthy happy kid. Our struggles are mostly that he can't eat what other kids do. And he won't drink a bottle when we're on-the-go, he has to be lying down and watching tv (hey, ya do what ya gotta do when this keeps your kid alive), so long outings or travel are very tough. But we count our blessings--his EE was caught very young and he doesn't need a tube--very lucky in the EGID world. Praise the Lord.

Thanks for reading, I'm sure I'm leaving out a lot of stuff, but those are the "highlights." You can poke around other posts labeled "ee" and "about" for more of our story.

Thursday, June 11, 2009

TILT--baking stuff

I was baking brownies the other day and T was in the highchair so I was narrating what I was doing... and I realized that I was using two of my favorite things and this blog post was born.

I've had that metal bowl since college (making it roughly 16 years old, I'm 34) and it's my favorite for baking. It's big, indestructible and works well with my mixer (I have a handheld electric mixer, oh to one day have a Kitchenaid stand mixer). All my other mixing bowls are glass and perfectly fine, but this cheap nostalgic metal one is my go-to bowl for baking.

The other thing I love and use nearly every time I bake is a spoonula. I "discovered" these while watching "30 Minute Meals" with Rachael Ray. The ones I have are Pyrex and came from Target. True to their name, they are a cross between a spoon and a spatula. When I'm baking from a mix (cookie or brownie), I don't even need my mixer, just a spoonula to blend the ingredients and then scrape the bowl. These spoonulas are the best thing I've found for scraping bowls. You can see from my picture how little batter is left in the bowl and I probably could have scraped more but I like to eat the batter. :-) So instead of blending with a spoon and scraping with a rubber spatula, you've only dirtied one utensil. Love it!

I use the spoonulas for all sorts of other things, like stirring gravy on the stove (they are silicone, I believe, and heatproof to a high temp) or I'll use it for cooking when I'm out of regular spatulas. Totally versatile, I highly recommend them.

Makes me want to bake more brownies. For more things people love, check out Diaper Diaries. Thanks!

Friday, June 5, 2009

Blitz It Friday--Big Project Part 1

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Weekly Blitz
This week my only blitz was on Monday. I set the timer for 30 minutes and did the following:
-changed the laundry
-cleaned the downstairs (half) bathroom (toilet, sink, mirror)
-scrubbed pots and pans
Very productive and no interruptions. Shocking ;-)

Big Project
Okay, so we're supposed to name a big project to work on this summer. Well my house is brimming with projects. It took having a second child to kick me in the pants and make me want to get organized. I've named 2009 my Year to Get Organized, but with so little "free" time, I'm not likely to finish by Dec. 31. It's June 5th already--eek! But a journey of a thousand miles begins with a single step (that's a quote, but I can't remember who said it, sorry). So for my summer blitz project, I choose my foyer table (or, more specifically, the top shelf of my foyer table).

Identify the Problem:
Historically it's been a dumping ground, lots of mail to be filed or shredded. I've made my first step toward organizing by putting out three matching baskets. Eventually they will be: one to file, one to recycle, one to shred (we're quite anal about not throwing out mail that could aid identity theft, but that creates a huge pile of crap waiting to be shredded). Right now one box is to file and one is to recycle, but the 3rd basket is full of stuff to sort. So in order to complete this project, I need to finish sorting the sort pile (that will leave the basket free to become the shred pile), and file the file pile. I also bought some $1 cardboard magazine files so that once the space is cleared I can set those up and stand up my various binders and folders. My goal is that between the baskets and magazine files that my foyer table will become an organized area of my home for sorting mail and finding the things I need.

Plan for the Week:
Between two kids and my struggles with time-management, my goal will have to be modest. I will try to do a 30-minute blitz of this area this week. The "to file" basket is pretty full, that's probably where I should start.

Start and End Dates:
I'll start this week (June 5) and give myself the whole summer. How about August 31 for a potential end date? I'd love to finish sooner and move on to another area, but let's be realistic.

Before Picture:
I'll try to post a picture next week.

For more blitzing, check out Organized Everyday. Thanks!