First Half of May

And now it's time to update the blog for May!

May 3rd was Owen's rescheduled endoscopy -- here he is as a cute little hospital patient. 

First week of May was also when he decided that maybe he really would give this whole 'walking' thing a chance . . . he took his first steps a whole month before, but it wasn't 'til May 3rd that he strung more than one or two of 'em together. 

 

First week of May -- this totally stressed me out, as we had Ellie on an strict allergen eliminating diet, and her eczema flare up like this . . . (we're hoping it was mainly seasonal allergies)

Then, a big highlight of the month was Annie & Ellie's tumbling performances!  They've both progressed so quickly, and Annie especially just blows us away with what she's learned. 

 Facebook updates:

May 1, 2013
So, spent the afternoon with or on the phone with doctors, and we have some good news, great news and some bad news.
Good news -- Owen's over his upper respiratory infection and cleared for his procedure on Friday! Woo hoo!
Great news -- Isaac's biopsy results came back NEGATIVE for Celiac Disease! Best news in WEEKS!
Bad news -- But, they did come back positive for EoE (the esophagus thing Ellie has, caused by food allergies), so Isaac's starting up some steroids and the allergen-free diet along with Ellie.

Uncle Cody came into town and took the kids on a bike ride -- and apparently someone put on Ellie's bike helmet backwards -- this is what happens when Mom tries to leave the house for a couple hours :-)

May 2, 2013
I feel this intense need to track down every adult who was on Annie's fieldtrip yesterday and tell them that I told her THREE TIMES yesterday morning it was going to be cold, and she should probably wear 'real shoes'.
Signed,
The Mom of the girl who cried on the walking fieldtrip because she thought her toes were gonna fall off.

Well, then. Turns out Annie's biopsies didn't come back great, like we expected. She has the same EoE as the other two. This is what I get for getting cocky and thinking that maybe ONE of my kids wouldn't have it
Also, she has gastritis . . . inflammation of the gut. Hopefully caused by the food allergies that once we remove,

the stomach will heal.


 May 3, 2013
Cody and the kiddos watching the elephants

   

May 5, 2013
My kids gorged themselves of raspberries, blackberries, blueberries and strawberries tonight, plus got a dessert of avocado chocolate pudding (avocado, cocoa, honey, coconut milk and vanilla) topped with bananas . . . man, you'd think they'd died and gone to heaven! Turns out if I take my kids off all candy and junk food ('cause it ALL has allergens in it!), they become MUCH more excited about healthy treats:-)

May 6, 2013
just wish we had ONE doctor's appointment where we got answers or a prognosis or an action planned that didn't seem to be designed to make life more difficult!
Annie's appt. with the allergist didn't reveal anything new, she came up negative on ALL 58 things they tested (which, like all of their allergy testing is really inaccurate and frustrating), so she's been added to the stay-off-eggs-nuts-wheat-dairy-peanuts-soy-corn-etc diet as well, and I've been told to keep them all on it for three months while all of them are on the steroids . . . then get new endoscopies for all of them. If things look better then, then we can take them off the steroid for a couple months, but keep up the allergen free diet, then get all them scoped AGAIN. Then if it's still looking good, add back in ONE of the allergens for 2-3 months, then get endoscopies AGAIN for all of them. Then add in another, then rescope . . . OK, SERIOUSLY!? The best plan that a team of highly educated specialists can come up with is to put my kinds under anesthesia 4-6 times a year (at several hundred dollars per kid per scope) for the next several years. All to take them off foods that we DON'T EVEN KNOW if they're having problems with or not.
This is so seriously disheartening. I'm having a 'curl up in the fetal position and cry in my room, if only the kids would let me' kinda day.

May 7, 2013
OK Ellie -- when the herbalist asks, "Have you ever heard of steroid psychosis?" during out appointment, maybe you should dial it down a notch . . . sheesh, kid! 

We should go play the lottery or something -- 'cause for supposedly 'rare disorders', we sure got lucky! Just got Owen's biopsy results. He does not have EoE (Eosinophilic esophagitis) like all three of his siblings, but instead has a related eosinophilic disorder, that's even more rare, where instead of in his esophagus, he's growing eosinophils in his duodenum.
Fortunately, his eosinophil count is low and we caught it early. We're going to continue on with the diet changes for now, avoid a systematic steroid for the time being (which the gastro doctor was happy with, as she said she wasn't sure thrilled about putting such a tiny baby on such strong meds if it wasn't necessary -- but for now the diet changes seem to be helping him out a lot, so we're going with that first and foremost), and we'll retest him down the road and see if the diet changes were enough to reverse the disease.
This isn't good news for Owen, but catching it early and it being fairly mild is great. And Greg and I are getting our feet back under us a little, and making some decisions for the family (some based off the medical professionals advice, some off our own parenting intuition), and are feeling better and more in control of all this chaos. Wish us luck! 

Went to Smith's to stock up on some more produce. Then I found the Manager's Special end cap that had an 8 oz. box of Ferrero Rocher's on half price. Shhhhhhh! Don't tell the kids! 

 May 8, 2013
Seriously I made the WORST pancakes this morning (a combination of a bunch of gluten free flours and ingredients that I attempted to turn into an actual batter) -- but my kids have GOBBLED them down. Poor kids, they don't even recognize horrible food anymore, they're just so excited to eat carbs:-)

May 9, 2013
Wow, this allergy thing makes me feel like a GENIUS -- we've been on Ellie's allergen-free diet for a couple weeks now and it only hit me today that I shouldn't be giving her a fish oil pill every day if she's supposed to be off all seafood -- d'oh!

May 11, 2013

 


May 13, 2013
My two year old while picking his nose this nose this morning, "Well, hello there . . . and how are you doing this fine day?" Seriously?! :-)

Thank goodness for vegans with Celiac disease -- I don't know how else I'd be finding half way decent muffin recipes that are gluten free, dairy free and egg free without 'em  

May 15, 2013
Aaaaaaand, the baby is running a 102 degree fever. Again.
Sigh.

May 16, 2013
I don't know what makes for a worse start to the morning -- me waking up puking, or Owen waking up puking.
Scratch that -- Owen puking is way worse -- I now feel like crap and have three different rooms that need some carpet shampooing . . .

After a five hour nap, Owen finally woke up with a 102 degree fever again. Then, because he also had a blow out diaper, I had to strip him down and clean him up and he shook the whole time, and screamed when I handled him with any more than the lightest pressure. Fortunately, the Tylenol has kicked in now and he's even eating a little! Poor kid . . . I always forget how horrible fevers are until either I run one or I watch one of my kids run one!

 

I can't imagine living in a better community! In the last couple days, I've had people call and check in, the cute neighbor girls all come over and clean up the kids' playroom and the backyard for us, a friend bringing me multiple bags of produce and several other neighbors asking if they could pick me up anything too! I love my neighborhood -- it's made up of the best people!

 

May 18, 2013

So Owen woke us up crying at midnight -- which turned out to be good 'cause in putting him down, Greg was able to hear water spraying in the kitchen. a broken pipe under the sink had flooded most of our kitchen, and when I went down into the basement it was coming through the ceiling in 3 places. An hour later we have most everything cleaned up, and poor Owen starts screaming -- 'cause he's throwing up again. Fortunately, I already had the carpet shampooer ready to go 'cause I'd just finished the basement . . .
Is it bedtime yet?!

 

May 19, 2013

Portrait of Owen this morning titled "Why I'm Not at Church Today and/or Why We May Never Leave the House Again."

 

 

 

 

While watching me make brownies for the girls' birthday party tonight, Ellie commented, "Wow, Mom. That really looks like scat."

 

May 21, 2013

I was out mowing the lawn when I suddenly thought, "What if I got my foot caught in the lawn mower?" (Since I was wearing sandals and Greg always tells me I'm wearing bad shoes for mowing the lawn). Then I thought, "Would the neighbors hear me if I screamed for help? While writhing in pain would I remember to tell the paramedics that the baby is sleeping upstairs in his bedroom? I can't just leave him up there! Would they go get the baby and bring him with us to the hospital? Or would they get a neighbor to come over and take care of him? What would my neighbors think when they went upstairs and saw the diapers on the landing? Oh, and my giant pile of laundry in the hall? And the three totes worth of clothes out in the baby's room that I've been sorting through, all over the floor? I don't want anyone to see my upstairs! Heck, I don't want anyone to see my downstairs! Maybe I could just tell the paramedic to call my Mom over instead . . . crap, I don't have my cell phone on me. Would I be able to remember my Mom's cell phone number if I was screaming in pain from having my foot mangled?" About this point I realized that I should probably start practicing those deep breathing exercises my therapist keeps recommending . . . :-)