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. :-)