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 . . . :-)

 

  

April

I'm trying to catch up on, at the least, getting pictures on the blog.  I don't know if I can even begin to catch up everything that's been going on in words.  It's been crazy for awhile.  Ellie's endoscopy came back positive for Celiac, as well as (EoE)  an allergic inflammatory disease characterized by elevated eosinophils in the esophagus.   This was unexpected.  Usually the symptoms include things like choking on food or trouble swallowing -- Ellie, at four years old, can swallow multiple pills at a time up to, and including, a flax oil pill.  Which is huge.  For awhile, the EoE diagnosis was almost an afterthought in my head.  Celiac seemed the most pressing -- off all gluten.  For life.  That seemed big.  It wasn't until meeting with allergists, reading more and talking to the G.I. again that the EoE diagnosis started to strike me as it's own 'oh crap, this is a big deal!' diagnosis.  We did steroids for awhile for Ellie, as well as our new super-fun diet of being off the top 8 allergens.  Wheat (already off of because of Celiac), milk (which we were already off of), soy, eggs, corn, nuts, peanuts and fish.  It's been about six weeks now since we started all this.  It hasn't been easy, and we actually began with a VERY simple, nutritious diet for Ellie (and all the kids) which basically was veggies, veggie and more veggies.  And some rice.  And the occasional banana.  We brought back in homemade stock after a week or so, then worked our way back to chicken. After a couple weeks we added in more fruit.  Just this last few days we added a little sausage.  The kids have done well with the diet, surprisingly well really -- but it hasn't been easy.  It's been stressful, expensive, relentless (try feeding four kids nothing but soft cooked veggies and rice -- they are hungry EVERY HOUR.  Constantly.  It never stops.)  But, it's gone better than I'd expected.
This last couple days we decided to trial adding eggs back into their diet (as I've felt really strongly that we need some more nutrition, especially cheap, easy, breakfast-y nutrition).  So far it seems to be going well.  
Oh, and after Ellie's diagnosis, we scheduled the other three kids for scopes of their own (poor Isaac even got to get a colonoscopy, since he's had the most bowel issues.)  There was some stress the day of their procedures, when Owen, who'd just come down with something, was bumped from the surgery schedule because he was too sick.  In the end, all four children were diagnosed with EGID (
Eosinophilic gastrointestinal disorders) -- Annie, Ellie and Isaac all have the eosinophils in their eosphaguses, Owen's were in his duodenum.   This has, understandably, been a really stressful time for our family -- but we feel like we're on the right path for now.  We've gotten into the groove of the diet, we've decided where we fall on the long list of medicines they've prescribed our kids and which ones we're comfortable using and which ones we aren't, and things are settling into a new norm.  It's hard -- the kids ask constantly what each food 'has' in it -- gluten? milk? I don't want them to become fearful of food, but at the same time, especially with Ellie and gluten, we have to impress upon them the signifigance of their food choices.  There's been lots of questions, lots of tears and lots of disappointments -- but I really do feel like what they will learn from all of this will eventually make it all worth it.  Not to mention the improvements to their health and bodies. 
It's just not easy.

Anyway, back to pictures, here's what I got for the month of April . . .

Family time at the park

 

My cute kids all sharing the bottom bunk one night . . . 

 

We activated our zoo pass, that my in-laws gave us for Christmas (best gift ever), along with Talina and Bailey, and have made it to the zoo a handful of times already in the last month or so . . . 

And my kids were really excited to get to meet their newest cousin, Claire, in person this last month.

The day of Annie, Isaac and Owen's procedures.
Except that Owen didn't get his done this day.
But we have cute pictures of him in a hospital outfit anyway.

Not happy -- but, of course, he was also sick.

 Aunt Star had an awesome work party at the Natural History Museum that we all tagged along to . . . 

We drink a lot of green smoothies around here . . . and the mustache's are just as cute every time :-)

Facebook updates:

April 29, 2013

I've been perfectly content with my 6 year old cell phone and basic phone plan . . . until now . . . we were visiting my Grandma's assisted living facility yesterday, and they had little snacks for the kids, and without the main packaging, I couldn't tell what was gluten free and what wasn't -- I need a smart phone just so I can keep on top of these food allergies/sensitivities.

 

Greg deserves a medal. As we've been going through fresh produce so quickly (since it's ALL we're eating right now), even picking stuff up on Saturday I apparently did plan ahead well enough, and last night realized we were going to be desperately low on food for today, and would require an early morning grocery shopping trip (with kids in tow!) So Greg took my shopping list, picked up at least 15 different kinds of produce (even price matching them!) and then CUT a bunch of it up so it was ready to go for breakfast, all before the kids woke up for breakfast this morning. I love that man.

 

ANNNNND, Owen's ear drum burst last night.
Meaning the tube is long gone and he will need surgery again to put in a new one. But not this Friday, because he'll be having his endoscopy this Friday. Assuming his infection is cleared up.
Sigh.

 

April 27, 2013

I got home and an excited Ellie ran up, "Mom, Mom! It's my rollie-pollie's birthday, and we're having a party!" "OK," I said as she rushed me to the backyard. "Oh yeah, and three of them died, so we're gonna have a funeral too!"

 

April 26, 2013

We're home from the hospital.
Annie's tests looked really good -- they took some biopsies to rule things out, but didn't see anything that had them really concerned.
Isaac's tests didn't go quite as well -- once again, more questions than answers! He has a lot of inflammation and abrasions in his stomach -- could it all be Celiac? Possible. They are putting him on acid reducers for now and we should know about the EoE and Celiac for him next Wednesday.
Owen's tests were the most disappointing -- 'cause they didn't happen. He's had a congested, snotty nose, but it turns out it's become an upper respiratory infection and they didn't want to risk putting him under. So, we will have to try again another week. Honestly, this was the hardest part of the day -- I thought we were closing in on our answers, only to have the 'finish line' (or what will actually be our starting pointing, changing life to fit everyone's actual diagnoses) moved back. I started crying in the waiting room -- I think the poor nurses didn't know what to do with me, and the anestesiologist possibly thought I was a horrible Mom (he told me that if it was 'my kid, I wouldn't risk it.' I didn't want Owen to get the procedure done if it wasn't safe, I was just really disappointed it wasn't going to happen.)
So, maybe next week . . .

 

 April 25, 2013

It has begun -- I need to somehow convince my two year old to consume 8 ounces of a Gatorade/Miralax every 20 minutes between now and like 6PM. Call me pessimistic, but I don't see this going super well.
Relatedly, no two year old should be sick enough to need a colonoscopy. Poor kid . . .

 

 Isaac keeps calling today his "very weird day". "Mom, can I have a popsicle for dinner, 'cause it's my very weird day." "Mom, do I get to eat jello 'cause it's my very weird day?" "Ellie, don't touch that orange drink! That's my orange drink 'cause it's my very weird day!"
Who knew pre-op cleansing days would be so exciting.

 

This is how I'm starting every morning -- about 45 minutes of finely chopping onions, garlic, broccoli, cauliflower, carrots, sweet potatoes, zucchinis, kale, spinach and celery before steaming it, then tossing it with some rice and coconut oil. It's actually really tasty, even if we are eating it for two meals a day for almost a week now (Ellie is on a short term soft veggie diet to try and get her body some serious nutrition, and to let her gut heal -- we alternate this with roasted sweet potatoes/cauliflower/onions/garlic and green smoothies with avocados, kale, spinach and banana).

 

 

   

April 23, 2013
I'm such an idiot! I've been reading packaging SO carefully to make sure we don't accidentally give Ellie any soy/wheat/corn/dairy/nuts/eggs. We kept just one box of cereal so I could keep giving the other three kids some every day until their endoscopies/biopsies this week, since you can't go off gluten until after you've been tested for Celiac. So every day I've dutifully given them their bowl of Cheerios when Ellie wasn't around so they'd be getting enough gluten.
Did y'all know that Cheerios were oats?! How did I not know that?! I totally thought they were whole wheat. Oops. (Although the 'o' at the end of Cheerios maybe should've tipped me off to the oats?) Oh well . . .
Good thing my Mom brought me over some pretzels for our gluten-still kids!
(They aren't gluten free oats though, and there is some wheat starch in there, so they were still getting some, at least . . . )

 

April 21, 2013

Lesson learned -- apparently spinach makes all the difference. The last several days I've made two green smoothies a day -- with spinach, kale, avocado, some carrots, flax oil and a banana (and a half a dropper of stevia or a teaspoon or so of raw honey). The kids have DOWNED it so fast that the entire blender of it is gone before Greg and I get our share! I ran out of spinach today so we tried kale, carrots, two avocados and two bananas -- kids were not fans. They drank it all still, but not as enthusiastically, but who knew spinach was that much of a game changer?!

 

The two hour long appointment I had with the Primary Children's Nutritionist was pretty much worthless -- the fancy meal planning guides she gave me don't work with ANY of our food allergy restrictions -- there's 18 different suggestions for breakfast, and not a single one that we can even eat.
Also, the lunch menu only has two or three suggestions (out of 15 or so) that don't include pseudo-wheat food (gluten free bread, gluten free crackers, gluten free macaroni and cheese). Seriously, we can't come up with non-processed food suggestions Panel-of-Dieticians-Who-Wrote-This?
And, even if we weren't dealing with dairy allergies, half (or better) of these recipes revolve around, or at least include, cheese or milk or yogurt, or some other dairy product, when it's also quite clear in the same manual that newly diagnosed Celiac patients will most likely have intestinal damage that will make them lactose intolerant until their gut heals -- and recommends avoiding dairy for 6-12 months.
Okay, rant over -- we had a rough breakfast around here, and it's made me ornerier than normal  :-)

 

 April 20, 2013

I thought getting dinner going and cleaned up with the water shut off was hard (Greg was working on a plumbing project) -- but it didn't compare to how obnoxious it was to get the boys cleaned up after eating! Went through a pile of wipes.

 

I am a genius. Greg is at a work 'team building' activity all afternoon and evening, so soon as the kids were done with dinner I told them they could take a bath. And every 20 minutes I add more warm water -- I may keep them in there for over an hour if I play my cards right. As for me, I'm sitting here reading a book . . .

 

April 15, 2013

Starting tomorrow morning I'm supposed to start a food diary for Ellie to show the Nutritionist at Primary Children's we're going to see Friday. I went ahead and started it tonight, 'cause writing 'Lemon chicken, roasted cauliflower, baked potato, sugar snap peas, spinach and carrots with a snack of red grapes' made me feel like I'm really on top of things. That way I'll feel better when 'fruit snacks' end up on the list multiple times over the next couple days  

 

You know what the best part about stressing 24/7 about what I'm gonna feed Ellie on her gluten-free, dairy-free, nut-free, egg-free, soy-free, corn-free diet is? I haven't even had time to worry about the giant slide at the mine that's thrown my husband's job up in the air . . . 

 

April 14, 2013

Starting to feel like Old Mother Hubbard!
Greg and I went through all our cupboards, pantry and cold storage and weeded out anything with gluten (and then a separate section for stuff that has corn, soy, eggs or nuts in it for now). My cupboards feel so naked . . .  

 

April 12, 2013

For a family who 'claims' to be sooooo supportive, I'm a little miffed that not one of my siblings have volunteered to go on a dairy-free, wheat-free, egg-free, nut-free, peanut-free, soy-free, corn-free or gluten-free diet with us as a sign of solidarity . . . .  :-)

 

Dear Isaac,
Thanks for trying to run your playdoh through my Pampered Chef cheese grater -- both the fine and thicker grates. How'd that work for you? :-)

 

April 10, 2013

I was out taking pictures of Greg's truck so we can list it on KSL (anyone want a 1998 Ford Ranger -- I'll give you a killer deal!), and as I was taking pictures I had Ellie standing next to me, snapping her fingers and saying, "Eyes on me, truck. Eyes on me. Over here. Eyes on me, truck." That kid makes me laugh.

 

Well, it's official.
Ellie's biopsy results came back positive for both EoE and Celiac Disease.
All three of the other kids are now scheduled for biopsies (and allergy testing for all four) in the coming weeks. (We can't start gluten free diets for the other kids 'til after their biopsies in a week and a half). The real concern now is figuring out what the allergies are that are causing the EoE, and as anyone who's' done allergy testing knows, it's not the easiest thing to narrow down. Wish us luck and keep us in your prayers!

 

April 9, 2013

"Mother," four year old Ellie cried triumphantly as she rushed up to the top step after running downstairs with her siblings to fill their bedtime water bottles, "Your children have returned!"

 

 "Hey Isaac, I need a big boy helper! Can anyone come help me pick up these toys and put them back in the play kitchen?"
He excitedly ran over and got to work.
About 10 minutes later, I checked back in, "Hey Bug, there's still a bunch of play food over here . . . can you help get it all put back where it goes?"
"Um, Mom . . . I think it's your turn to be my big boy helper. Mmm'kay?" as he hands me a toy to put away and walks off.

 

Aww, I'm pretty touched to find out my Dad's spent part of the day googling Celiac Disease and freaking himself out . . . :-)

He's been calling my Mom, all, "Did you know they can't even KISS someone who's just eaten wheat?! Or play with playdoh?! Or wear certain lip balms?!"

He did let me know which beers are gluten free -- which was, you know, super helpful  :-)

 

April 8, 2013

We don't have Ellie's biopsy results back yet, so we don't have any new info there -- but Isaac and Owen's lab work came back. Owen and Isaac are both showing signs that point to the same thing Ellie was diagnosed with (Eosinophilic Esophagitis), and of food allergies. Owen is also showing some signs of Celiac disease as well. We meet with the gastroenterologist once Ellie's biopsy results come in and go from there . . .

 

April 7, 2013

Greg and Isaac are playing with playdoh . . . every minute or so, I hear Isaac gush, "Thank you so much for helping me Daddy, thank you so much." He's SUCH a sweet kid!

 

 Isaac just took his second 4+ hour nap in the last three days . . . growth spurt? Getting sick? He hasn't taken a nap in months, then twice in three days he's slept the WHOLE afternoon. Weird.

 

April 6, 2013

Isaac just came rushing in, "Hey Mom! There is a GREAT song about you! It's all about you, and it's GREAT!"
"Really, a song about me?"
"Yep, all about you . . . Hush little baby, don't you cry, Mama's gonna buy you a rocking chair. And, um, if that rocking chair's too big, Mama's gonna buy you a fast car . . . if that car is too big, Mama's gonna buy you a ugly banana . . . if the banana is too big . . . Mama's gonna buy you a big green pear . . . "
A big white shirt . . .
A boat . . .
A rocking trash . . .
A rocking chair (again) . . .
The song went on for several minutes and repeated a few of these over and over again. Best tribute song ever.
All the best songs are about Mom's and really random shopping sprees. :-)