Gluten-Free

It's finally time for Russ to go gluten-free.  I've been putting it off for so long, hoping that it wouldn't come to this, but it's clear that it's in his best interest, so here we go!

Why is it in his best interest?

Russ has had two scopes, and both showed that his villi in his duodenum have mild damage.  It's not enough to automatically diagnose him with Celiac Disease (CD), especially since his blood test for CD was negative (false negatives are common), but combined with a family history of Celiac plus Russell's other symptoms, it's always been a distinct possibility lingering in the back of my mind.

His other symptoms of Celiac Disease are:

• anemia
• poor weight gain and weight loss, even when he eats well
• blood in his stool
• mucous in his stool
• extreme bloating
• abdominal pain

This is skinny little Russell in the morning, after a bowel movement and before eating much:

This is bloated little Russell at the end of the day:

The big factor making us decide to go gluten-free for Russ is that he has been putting words to his pain.  In the evenings, he will often say "owie" in the saddest little voice.  When we ask where his owie is, he says either bum or belly.  And it's no wonder, being as bloated as he is.  I've always thought I could ignore symptoms as long as it doesn't affect Russell's quality of life, but now it's clear that he's in pain and I can't ignore that!

Russell's weight gain (or loss, I should say) has been concerning.  In the last two months he has gone from 20lbs 3oz to 21lbs 3oz and back down to 20lbs 6oz.

This is what I have recorded for his weight over the past three months:

• 7/26: 20lbs 0oz
• 8/5: 20lbs 1oz
• 8/8: 20lbs 3oz
• 8/13: 20lbs 7oz
• 8/16: 20lbs 3oz
• 8/21: 19lbs 11oz
• 8/27: 20lbs 1oz
• 9/2: 20lbs 7oz
• 9/8: 20lbs 8oz
• 9/13: 20lbs 7oz
• 9/23: 20lbs 13oz
• 10/8: 21lbs 3oz
• 10/22: 20lbs 13oz
• 10/28: 20lbs 6oz

As you can see, he's not doing well with his weight gain at all.  When Caleb was 21 months adjusted, he weighed more than Russell does at 22 months.  And at birth, Russ weighed more than 3x what Caleb did!  It's just not right.

I've come to terms with the fact that I can have healthy kids who aren't on the charts (you don't need to be 50th percentile to be healthy), but when he's eating a good variety and volume of foods and drinking plenty of rice milk and he's still not growing, it's just not ok with me.

So, the next most obvious step would be to remove gluten (found in wheat, barley, and rye and their derivatives) for a time and watch for improvements.

It's going to be weird that Caleb can have things that Russ can't (Caleb can't have wheat, but he can have barley and rye).  I'm not concerned about my ability to give Russell good food that is gluten-free, but I'm worried that Russell won't be happy about not having his favorite breads and crackers.  I suppose he'll just have to get used to the substitutes.

So, wish us luck in this next big step!  It's disappointing, and life-changing, but still so minor compared to what we've been through with Caleb.  But still, I wish my little guy didn't have to go through this.  It baffles me to think that there are kids out there who eat and drink and grow without problems.  That's crazy talk!

Here's to better health for my little Russ!

Changes...Diapers, that is....

This week, Caleb wins the prize for the best big brother and the best son.  My almost-4-year-old changed my almost-2-year-old's diaper with very minimal help.  It. Was. Awesome.

If he makes this a habit, I'd be much more tempted to have a third child.  I could get used to this!

Also, Russ was a great sport.  He just laid there the whole time.

My kids are awesome.

Home Improvements: The Bookshelf/Hutch

Our area has the most awesome online classifieds.  It has a whole free section, and when I'm feeling like doing a project, I keep an almost constant eye on it for a few days and snatch up some free furniture when I find something I like that's close by.

This little hutch (or is it a bookshelf?) was only a few miles away, and I could easily see its potential!

I love how some nice crown molding can so quickly dress a piece up, so I picked some up, cut it to fit, and attached it with liquid nails.

Then, like all of my painting projects start, I sanded it down just enough to scratch up the surface, sprayed it with Kilz spray primer (only one can--about $8), and painted it.  I used pure white paint, and it took two full sample cans ($6).  Then I taped the inside back and painted yellow stripes.  The color of the stripes is Warm Muffin, by Behr.  I think it's perfect.  :)  I also used my trusty Rustoleum Decorative Glaze to give it an antique feel.  I was worried about the glaze making it look like a dirty white, especially being placed against a white wall, so I used baby wipes to wipe it off instead of just a rag.  And then, of course, I finished it off with a good coat of wipe on poly in clear satin.  I must say, I'm pretty pleased with the results.  And for less than $30, I couldn't be more happy!

We plan on hiding a few kitchen appliances in the bottom cupboard, since it's being used in the dining room.  The top is also working great to display my pretty clear vases, which frees up some cupboard space in the kitchen.  It also gives me a place to feature that awesome antique fan from the '40s or '50s that I spotted in my dad's garage.  It immediately caught my eye, and he told me to take it!  Yay!

I love that I have the confidence and opportunities now to use different techniques.  I'm so glad that I put on some nice crown molding!  I think it completely transforms it.  I'm also pretty excited about the stripes.  This piece has some character and it fits perfectly on that big, empty wall in my dining room.

:D

Home Improvements: The Window Seat

We have one room in our house that we barely use.  We call it the "Front Room" because it's at the front of the house, just off of the entryway.  It's a shame we don't use it more, because it has a vaulted ceiling, a big fireplace, and tons of natural light.  But there was always something a little awkward about it.  It could be that it has a much more formal feel to it, thanks to the formal couch and wing-back chairs that I fell in love with many years ago.  Now that I've defined my style a little more, I would probably choose different furniture if I had to do it all over again, although I still think they're beautiful.  It could also be that it's kind of separated from the rest of the house.  We have to walk through the entryway to get to it.

There is one project that has been begging to be done ever since we moved in.  A window seat.  The big 6-foot space was made for one, with the heat vent being set out and all.  So my darling 20-month-old, Russell, decided to build me one all in one Saturday.

He started by prying off the existing baseboards:

 He was left with this glorious space:

Then he built a frame out of 2x4s.  His electric drill ran out of juice, so he tried a hammer and nails before giving up and borrowing our kind neighbor's drill:

Then he put on the prefabricated cabinets that he bought at Home Depot.  They are 12x12x36 inches and are meant to go above the fridge.  They were 20 percent off, which saved us about $40 on all three of them.  Awesome!:

After the cupboards were screwed onto the base, he put the top seat part on:

Then painted the first coat on the top before going to bed:

In the morning, he admired his handiwork:

He was pleased:

Then is when his 3.5-year-old brother, Caleb, stepped in.  He helped out with the sewing.  We just replaced our old mattress with a new one and were left with a foam mattress topper.  Instead of buying the extremely expensive foam from a craft store, we used this to greatly decrease the cost:

Ta-da!  The fabric isn't as taut as it would have been had I used craft foam, but it was worth it to save the $$.  Caleb just sewed the fabric into a tube and inserted the foam.  He didn't make it removable because he promised that he wouldn't spill food on it, crawl all over it with dirty hands and feet, or throw up on it.  But if he does (we all know that sometimes this kid just has to vomit), then I'll be ok with removing the stitching on one end so we can take off the cover and wash it:

Then the boys removed the doors and painted two coats on the fronts, then screwed them back on:

Then the only thing left to do was make the pillows.  So Caleb cut them out to size:

Sewed them:

And enjoyed his handiwork:

The beautiful variety of pillows:

The finished product:

The whole room...vaulted ceiling, fireplace, sunlight, desk (that I refinished) and all:

Didn't my boys do a great job?!:

They sure enjoy laying there, watching for a firetruck to pass:

It does, after all, have a beautiful view of this lovely tree:

All together, the built-in part of the seat cost about $200 and the fabric for the pillows and seat cushion cost about $50.  That's a pretty huge bang for our buck!

How do you like it?  Not bad for a weekend project, eh?  I have a feeling we'll be enjoying this room a whole lot more.

:)

Scopes: Russell

Oh, Russell.  Russell, Russell.  Where to begin?

First off, Russ doesn't have any more inflammation in his digestive system any more, like he did during his first scope.  So that's our one good result.

Drugged and happy and ready to go into the OR.

Second, let me educate you further regarding EGIDs.  You see, they're rare.  The lower you get in the digestive system, the more rare they are.  EGIDs are most common in the esophagus, and there have been a good handful of studies done and some medications developed to help treat Eosinophilic Esophagitis (EoE).  But in the stomach, duodenum, and colon, there is a sore lack of research.  In fact, there technically is no diagnostic criteria for lower EGIDs.  So, although our GI doctor says that it takes a minimum of 40 eosinophils per high power field to diagnose someone with Eosinophilic Duodenitis (ED, what Caleb has), another doctor could go by a completely different number.  How ridiculous is that?!  Part of that is because the "healthy" number of eosinophils in a person's digestive system varies based on where in the country you live.  Weird, I know.  As if it wasn't complicated enough!  After some recent research of my own (aka, asking around to find out what people who have been to the APFED conferences have learned from some of the top experts in the world), I found some numbers that I feel comfortable believing.  There are many reasons why I love our GI specialist, but her knowledge of EGIDs is not one of them.  So, according to more knowledgeable specialists, in order to be diagnosed with an EGID, you must have an eosinophil count equal to or greater than the following:

Esophagus: 0
Stomach: 10
Duodenum: 20
Large Intestine: 10-20

According to that, Russell would have been diagnosed with Eosinophilic Colitis (EC) from his first scope when he was 11 months old (38 eos/hpf in his colon), and diagnosed with ED from his scope last month.  He had 30 eosinophils in his duodenum this time.

Russ is bloated at the end of every day.  His shirts pop up, just like that chubby mouse on Cinderella.  That cannot feel good.  :(

He also had some "mild focal villus blunting" in his duodenum this time.  Last time he had "patchy villus blunting."  These, along with his extreme bloating, give me reason to believe that we're not out of the woods yet concerning Celiac Disease.  If Russell ends up having to go off of wheat/gluten, I'm going to regret trialing wheat with Caleb.  But it was the most logical next step for Caleb's diet, so we had to go ahead with it since Russell technically doesn't have a diagnosis.

There are many times where Russ will specifically avoid the foods that Caleb has to avoid, and I can't help but think that it's because they cause him pain and he knows it.  So we just try to offer him a variety of foods and trust that he's "healthy" enough to eat what he needs to grow and develop.  But at 20 months old, the poor kid is barely over 20 pounds.  He still won't drink milk of any sort--just a dairy-based toddler formula and a hypoallergenic formula.  I'd like to get him to drink rice milk or coconut milk, but it's hard trying to take away his formula when he hardly drinks enough of it as it is.  His diapers aren't very wet these days.

However, our GI doctor still believes that he doesn't have anything.  She hasn't diagnosed him with ED or Celiac.  So that's good and bad.

Although, it's easy to see that Russell is healthier than Caleb ever was.  A feeding tube has never crossed my mind for him.  Nate and I feel like we should be fine not limiting Russell's diet for the time being, especially since most of the time we all eat the same as Caleb.  If at some point Russell's health really goes downhill, we will know to scope him again because it wouldn't be surprising if he ended up with a technical EGID diagnosis some day, although we know now that he pretty much has it.  Until then, ignorance is bliss, right?

Scopes: Caleb

Last month, Caleb and Russell both had endoscopies.  On the same day.  Boy was that fun.  Russell also had a sigmoidoscopy again (which is like a mini colonoscopy).  Both looked perfect to the naked eye--no redness, nice and smooth, etc.  That's pretty normal for people with lower EGIDS (aka, the disease is in the stomach, small bowel, or colon--not in the esophagus).

He was really, really excited about the toy cars at the hospital.

All drugged up and ready to go to the OR!

The biopsies are where the real results are seen.  We were pretty nervous about Caleb's results.  A few times the week before, Caleb had told us, "I ate too much and now my tummy hurts," and that was after eating no more than a few bites.  He has also been burning out with his oral eating.  He can no longer eat enough to gain weight, so we've had to increase his tube feedings by quite a bit.  It's awful having to do that.  He's used to the routine of having to eat, so he asks for food but then he won't eat it because he's just not as hungry.  But his health is more important than his oral skills, so we've had to lower our expectations when it comes to actually ingesting food of his own accord.  We just can't have it all, I guess.  (Side note: since starting to increase his tube feedings again, we've been giving him 5 ml of coconut oil 2-3x daily, and it has really helped him gain weight!  He's up to 26lbs 11oz now, which is a great improvement for him!)

So, we were nervous about Caleb's biopsies, but they came back clean!!  YAY!  No eosinophils!  If he had been reacting to any of the foods that he's been eating, it would have been a really big mystery trying to figure out what food to remove from his diet.  We were so relieved that he can keep his foods, and that we can trial a new food!  So he can now have anything except: dairy, soy, eggs, peanuts, tree nuts, fish, and shellfish.  We're trialing wheat, and so far so good.  It usually takes him at least a month before we see concrete signs of a food reaction (vomiting, complete food refusal), so for now we'll just enjoy crackers and pretzels and tomato soup and new cereals and bread and cake and cookies.  :D  The other day we made my favorite kind of chocolate cake, without any substitutions!  It was incredible!

Helping me make a celebratory cake.

If there is any question as to whether or not he's reacting to wheat, we'll have him scoped again.  But if two or three months from now, we still can't tell if he's reacting or not, he'll have another scope.  Which would work out perfectly, because we've met our out of pocket max for the year and any surgeries from here on out are free.  ;)

Hooray for hot dog buns!

Hooray for toast and jam and cinnamon toast!  (I used coconut oil to substitute for butter.)

So, wish us luck!  How awesome would it be if Caleb could end up having everything except for dairy and soy (which we already know he reacts to, so we don't expect that he'll ever be able to have them again)?  That just sounds like a dream come true, compared to where we've been!  It's always possible that he could develop a reaction to something he's not currently reacting to, or that he'll stop reacting to something that he used to react to, or that he's not currently eating enough of something that he would react to (like celery or quinoa or oatmeal, which he has only had a few times), so we still have to be very aware of what he's eating, but this is a giant, huge, awesome step in the right direction!

 We had a little pretzel and cracker party with our best friends on the day that we got the good news.

 Eating some yummy wheat cake!  He actually didn't like the cake much, but he was a big fan of the frosting.