Um. Hi.

The poopy hit the fan at the end of April.  Like, really.

There was Easter.  Good times.  Not so much candy this year.  You can see pictures over on Flickr.

Mikey's celiac test came back negative.

We went to a depressing for the adults and uplifting for Katie conference on Pediatric Crohn's and Colitis.  Depressing for us adults because we had to sit and listen to a bunch of seminars talking about all sorts of horribleness the chronic disease could cause - physical symptoms, mental symptoms -  treatment options and the like.  We also saw some kids that just looked really sick.  Feeding tubes and bandages and just ... sad.  It was a dose of reality about what Katie could be facing in the future. And it was uplifting for Katie because she got to hang with a whole group of kids that had the same medical problems she does.  She didn't feel so alone in her struggles.

The kids Spring Break happened.

I had them re-tested for allergies and some old allergens dropped off and new ones popped on.  Katie got rid of egg and gained trees and, of course, dog.  Mikey didn't lose any food allergies but he gained grass and cat.

I went to a State PTA convention and was voted in as next year's Co-President of the kids elementary PTA.

Ralph was neutered.

ANNNNNNNDDDDD, that's when it all went to poop.

Katie had been on her new medication a month (see last entry) and slowly weaned off of her steroid. As soon as she was completely off her steroid, she began to have a Crohn's flare up.  Actually, it was the day that I met with the school nurse and Katie's teacher to put a 504 plan in place to protect her rights for equal education in the face of chronic illness (read more about 504's here).  If you don't know what I mean by flare up, you can read about them here.  Who knew that the seminar that we had attended a few weeks earlier would come in handy so soon.  We had never experienced a full on flare up, but knew what to expect because of the seminar.  Ultra-bummer.

That last Sunday in April, the 26th, was Ralph's first birthday and also happened to be the day one of Mikey's good friends had a birthday party.  Mikey wasn't able to go to the party because he was sick and he had thrown up.  As the day went on he got sicker and sicker - low SpO2 levels and increasing incidence of vomiting.  He was so sick that after dinner I took him to the Urgent Care Center.  At the Urgent Care center he got worse.  They sent him to Children's Hospital emergency room.  He was not improving and ended up in ICU.  The official diagnosis was pneumonia in one lung with the complication of a possible collapsing of the other lung.  He was hooked up to an IV to replace the fluids he'd lost from vomiting, given super doses of antibiotics and high flow oxygen to pop his lungs back open.  Finally after a long night and two days in hospital, he went home on Wednesday, April 29th.

Katie was still flaring.  Badly.  Really badly.  And she was not eating.  The day after Mikey got home from the hospital we headed back to Children's to the GI clinic to talk with a nutritionist about switching Katie to a liquid diet consisting of nutritional shakes.  The liquid diet was going to be used to give her GI tract a rest from breaking down food while assuring that she still got all the nutrition she needed.  We didn't want to put her back on steroids again.  Steroids are not good for anyone, especially growing bodies.

The first weekend in May was spent anxiously trying to get Katie to drink shakes and eat, well, anything.  She didn't.  It was a tough weekend.  One of the toughest yet as far as Crohn's went.

On to May...

By coincidence, we already had an GI appointment set up for Monday May 4th.  Back to Children's we went.  The doc listened to Katie's symptoms, was not shocked at our failure to get her to drink the shakes and told us she should be hospitalized that day.  They were also concerned that she had caught the virus that landed Mikey in the ICU to boot.

A couple of options were floated:  immediate high doses of steroids via IV to get symptoms to stop OR a non-medication route of using a feeding tube to do an all liquid diet (since she wouldn't drink the shakes (she thinks they're disgusting)).  We chose feeding tube.

Upon entering the hospital she began to exhibit other symptoms - a super high fever and weird lumps/bruises up and down her shins.  The doctors decided that she might have been allergic to the immunosuppressant medicine that she had started the month before and it was only now that we were seeing the symptoms because the steroids she was previously taking were masking them.  Her fever became so bad at one point that, even though they were using tylenol to bring the fever down, they had to line the sides of her body with long ice packs.

Long story short, the feeding tube was a no-go.  Even with "calming meds" the nurses and I were not able to get the tube up her nose and down her throat into her stomach.  We tried four times.  To say that Katie was upset would be an understatement.  She was a wreck and I wasn't much better.

There wasn't much choice but to go a medicine route.  We had two choices: an injection every other day or an IV infusion of medication every 6-8 weeks.  I let Katie choose because the side effects of both medications were pretty much the same.  Both nasty.

Katie chose IV infusion because it would be less "pokies" in the long run.

She got her first infusion in-hospital and, crazy as it sounds, was ready to go home the next day.  That's how fast (and how powerful) the meds were.

We came home and Granma was in town for a visit (it had been planned a few months back).  Katie was happy she got out in time to see her.  We had a nice relaxing weekend recouping at home.

And, well, since then it's just felt like a slog to "catch back up" to life as we know it.  Various school events, after school activities, field trips for both kids, another IV infusion appointment, Crohn's and Colitis Walk-a-thons, etc.

OH!  And in the middle of May my youngest sister had a baby!  It took a while for him to make his way into the world and he did so in a most dramatic fashion.  What's with kids and drama?  Sheesh. Welcome, Jacob!  We love you!

One thing has led to another and now it's already mid-June and Mikey's last day of school is tomorrow.  Katie's is Thursday.  And, as soon as that last bell rings, we'll be jumping in the car to bring her for IV infusion #3.  After that it'll be every 8 weeks.

Sigh.  Summer's right around the corner.

We've got vacations planned.  Some really big ones.  Lots of summer camps for the kids and two camping trips (Will Ralph come camping?  Stay tuned!).

It's all a bit overwhelming.  Having both kids laid low in the space of two weeks was a bit too much to handle.  Stressful, at times depressing, thoughts swirling in my head about the what if's.  Walking around with an all consuming feeling of dread and anxiousness hanging over my shoulder.  Discussions between myself and Huzbend becoming all about medications, treatment options, how to handle symptoms, coming up with strategies to deal with future illnesses and hospitalizations, the risks.....we kind of lost our "life" for a while there.

I can tell that I'm ready to move on because I'm on here writing about it and thinking about it again.  Putting it on here will help me in the future.  I'm sure of it.  Somehow.

I'm happy that we're back to "a normal".