Big changes are a'comin'!

We're doing something gutsy here.  (No pun intended.)

The Background
For a while now, we have been wanting to lift some of Caleb's diet restrictions.  It all started when I realized that he was much more sick after we started treating him for this disease than he was before.  It just wasn't adding up.  I was ready to throw in the towel.  I can honestly tell you that I was watching my son die slowly.  It was a horrid, haunting realization.  But then a miracle happened!  I got strep four times in three months, Russell got a strep diaper rash twice, and Caleb got a strep diaper rash once.  We were on a lot of antibiotics, and I ended up getting my tonsils out so we could stop the vicious strep cycle.  I would literally go a few days past my 10-day dose of antibiotics before I would come down sick again.  And it wasn't just a tickle in my throat.  No, it was full body aches, fevers of 103 degrees, and chills.  I thought I would die.  But the very last time I got strep is when Caleb got his rash.  He went on antibiotics for the third time in his life (the first time was in the NICU and the second time was for his only ear infection when he was 16 months old).  While he was on antibiotics, he stopped throwing up!  And he started eating by mouth!  And he could tolerate a volume increase for the first time since he got his feeding tube!

In case you didn't know, antibiotics tend to speed up your digestive system, which gives most people diarrhea.  But not my kids!  Even Russell ate more and wasn't so bloated while on antibiotics.  Actually, one of the eight meds that we tried to help control Caleb's vomiting over a year ago was erythromyacin (which is an antibiotic) for a condition called "delayed gastric emptying" (DGE).  But it didn't help at all.  It just gave him horrible diarrhea and a terrible diaper rash.  But there's something about amoxacillin that's different.  So I informed the GI doc, who prescribed augmentin for both of the boys.  And Caleb GAINED TWO POUNDS in two months!  Before that he had gone eight months without gaining a thing!  He's still only 25lbs 10.5oz, but that's a major improvement from 23lbs!  So as long as it's helping my boys to eat/grow better, they'll be on augmentin.  It could be a life long thing, which would stink, but it's better than being constantly sick and throwing up and literally starving to death!

The Recent Events
In the last six months, Caleb has trialed seven foods.  That's pretty fast, as far as food trials go.  And most people don't trial seven foods before getting a scope.  Most people trial three or so.  Because if you "fail" a scope (meaning the scope shows eosinophils), then you have to decide which food to pull from his diet.  With seven foods all at once, you wouldn't know which food to blame for causing the eosinophils.

But we just felt like it was the right thing to do for Caleb.  We didn't trial by any method, like some people do.  We just gave Caleb foods that he was curious about.  Oh, you want to try a carrot?  Ok.  Here ya go!
So we kinda coasted for a while, letting Caleb trial gluten/wheat/dairy/egg/nut/practicallyeverything free chocolate chip cookies.  Then the same kind of bread.  Then peas.  And so on.

Then one day Caleb took an ice cream sandwich out of the freezer and insisted that I eat it.  When I insisted that I would not eat it and insisted that Caleb put it back in the freezer, he broke down.  He told me that he wanted to eat it.  So we sat at the kitchen table and I held him and we both cried.  He's finally realizing that he's different and it's not fair.

So I called his GI doctor and requested a scope (his fifth).  I asked her if we could go "top 8 free" if his scope came back clear, and she was fully behind it.  Apparently a large number of people with EGIDs can control their disease with just eliminating some or all of the top 8 most common allergens (dairy, soy, wheat, eggs, peanuts, tree nuts, fish, and shellfish).  I wish I had known that two years ago.  That's my main regret when it comes to Caleb's course of treatment.  I don't regret the feeding tube, not for a second.  I just regret that we limited his food so drastically at the very beginning.  For a lot of people, that's what it takes.  But we didn't need to be in such a rush to take away foods.  I just wanted him to feel better right away, and we were just following doctor's orders.  We have made every decision for him based on our knowledge and what's in his best interest, but we certainly didn't know then what we know now!

Anyway.  He had a scope on the 10th and yesterday we found out that his biopsies were completely clean!  Not one single eosinophil!  For most people that just means a) you get to keep the foods that you recently trialed, and b) you get to trial some more foods and then do another scope and then more trials and then more scopes, etc, etc, etc.  But for us, since the only foods that we know Caleb has reacted to are dairy and soy, we are going to be brave and let Caleb try anything and everything that isn't: diary, eggs, soy, wheat, tree nuts, peanuts, fish, shellfish, and red food dye (because it makes him behave like a monster).  Isn't that crazy?!  The foods that he could eat before were: apples, grapes, peaches, pears, tuna, chicken, white potatoes, sweet potatoes, rice, canola/safflower/sunflower oils, green beans, peas, carrots, chocolate, cinnamon, and tapioca flour.

The Future
So the game plan is to let Caleb eat whatever he wants that is free of the above listed foods, decrease his nighttime tube feeds so as to increase his appetite, and after a few months do another scope.  If he fails the scope...then we'll all be devastated.  We'll know that the choice to increase his foods all at once was a mistake and we'll have to figure out the offending food(s), which could be very, very difficult since he'll be eating such a huge variety of foods.  Worst case scenario, we will have to bring him back to the list of 16 foods that he was on as of two days ago.  That's going to be psychologically very hard on little Caleb.  But, imagine if he passes the scope on his new diet!  Then we will trial each one of the top 8 allergens one at a time and scope after a month or two on each new food.  It's possible that he won't even react to them all.  Imagine that!

Whatever happens, it's nice to have a plan.  The GI doc said she is "at my disposal."  We've still got a long road ahead of us, but at least we're finally not stalled.

And now we get to enjoy watching Caleb eat marshmallows for the first time:

This is what Caleb looks like when he gets a common cold.  This was January.  Unable to stay awake or move.  Unable to keep anything down unless we put him on the feeding pump continuously at about 45ml/hour.

 This is him on the third day of his cold; able to stay awake, but still too weak to move.  Losing weight that he can't afford to lose.  Can you see why I've been scared for his life?

This is "Healthy Caleb," in March.  When he put on his much needed two pounds, his hair grew a ton!  His whole body has been craving better nutrition, obviously!

This is Caleb eosinophil free and eating rice milk ice cream!  We celebrated his clean scope and expanded diet by going to an ice cream place that freezes rice milk (and other milks) with liquid nitrogen!  We brought Caleb's allergen-free chocolate chips for them to mix in, and ordered vanilla flavored rice milk with agave and marshmallows. :)

 He didn't eat much (didn't even touch the marshmallows), but he tasted it a few times.  It was worth it, just to feel like we're "normal" a little bit.  The last time he had ice cream was the day he got his NG feeding tube and went off of all foods.  It was a very emotional experience for me, watching him eat ice cream again!

So even though things are looking up and we're feeling hopeful that this next step will improve the quality of life for Caleb and our whole family, it could still backfire on us, leaving us with more problems than we had last week.  It's a gutsy move, and I'm one to try to play it safe.  I know there are so many people who pray for Caleb, and we've felt the power of your faith uplift us and work miracles on our behalf.  Thank you all so very much!  But please don't forget us now that things seem to be looking up.  We'll try to enjoy this next step in Caleb's course of treatment, but I won't be able to rest easy until his next scope.

Russell is 15 months! (plus almost a month...)

Russell had his 15 month checkup a few weeks ago.  Here is where he's at with development and milestones these days.

At 15 (almost 16) months, Russ:

• Weighs 18 pounds, which is below the charts.  He weighed 18 pounds on March 18th, and has gained 2oz in the three weeks between then and now.  Well, he gained more than that, but then he lost it, like he always does!  He loses weight even when he seems to be eating well!  This is a problem in my eyes, but the pediatrician doesn't see it.  He just says it's Russell's pattern and that's just how it goes, although he never feels comfortable going three months between appointments, so we always go in every 1.5 months for a weight check.  The GI is aware, so we'll see what happens
• Measures 29.25 inches, which is on the charts!  He has never been on the charts before!  He was a short 18 inches at birth and grew really slowly from then on, so for him to actually make up some height and get up to the 5th percentile is great news!
• Wears size 6-9 month clothes.  Some of them are a bit tight, but most of them fit just right
• Is almost ready to graduate from size 2 diapers to size 3.  Since we use Costco diapers for him, we didn't think we'd make it through another huge box of size 2 diapers, so we bought size 3.  They're a tad bit awkwardly big on him, and they don't get very soaked, but oh, well
• Has been walking more than crawling for about a week now!  I guess if I had to put an official age on it, I'd say Russell started walking at 15.5 months old.  Caleb was 16.5 actual months old, 13.5 months adjusted for prematurity.  It's really weird to me that Caleb, who was at such high risk for cerebral palsy, walked when he did while Russell took his sweet time.  I don't care what anyone says, I think it's nicer to have a walking baby than a crawling one!  By this age a kid can get into anything they want whether it's by walking or crawling.  When they walk, at least they can go outside without getting dirty (and crawl on my messy floors without getting dirty...hehe!), they can keep up with older siblings, etc.  And plus, it's just so darn cute to watch him waddle like Frankenstein! I like having a walker :)
• Knows lots of words!  It's hard to tell if you don't speak "Russellese," but he says things like:
• balloon: boon
• milk (sign)
• hi (to every.single.person in every.single.store he goes in!)
• bye-bye
• doggie: dajie (sounds a lot like how he pronounces "Daddy")
• Mommy: Money
• up: ah
• He also puts words together, like signing milk while saying please (sounds like "peas"), saying "arf" (for dog) while signing please (he really, really wanted to pet that dog at the park!), signing milk while saying more, etc.  I suppose he mostly combines a lot of signs with spoken words to make his own sentences.  Whatever works!  At this point we're able to request that he says please before giving him something, and up before we pick him up.  Hopefully some day it will reduce his wining...
• Loves climbing on everything he can!  He has a creative mind, this Russell!  He constantly gives Caleb new ideas of ways to get into trouble!

• Loves identifying the sounds that animals make...but always just rotates through moo, baa, and arf.  He very excitedly points to the horses every time he looks out the windows and and shouts, "MOO!  MOO!  BAA!"  No matter how hard I try to teach him, he just won't say, "neigh!"
• Although he thinks every animal either says moo, baa, or arf (or all three), he does know that dogs always say arf and monkeys always say "Oo!  Oo!"
• Knows to say "cheese" (chee) for the camera:

• Caught on to Easter egg hunting:

• Gets weird rashes from time to time, tempting me to bring him to the allergist (he currently has a rash on his face from when he slept on his left cheek during his nap yesterday and it just won't go away):

• Takes one nap in the late afternoon and sleeps at night from 9PM to 10AM or later.  He doesn't always fall asleep right away when we put him down, but he goes down without a fuss.  That's my boy!
• Gets really cranky and clingy in the evenings (and sometimes all day).  This evening I set him down when he saw a toy he wanted to play with on the floor, then I had the gall to walk out of the room, four feet away from  him, for literally 10 seconds just so I could turn the light off in the other room.  How dare I.  He was so upset that he was clingy and cranky for the rest of the evening (or at least what I saw of him...I had somewhere to be after dinner, so Nate took care of him until bed time and he may have been able to divert his attention away from being so terribly upset).  This is normal for him
• Tries to be a big boy, and looks so cute doing it!

• Is still bald as could be, as you can see, although he does have a little somethin' in the back!  And I think it's blond, but I could be wrong ;)
  

There are lots of other cute little things that Russell does from day to day that contribute to his cute little personality that I just love (like giggling and shaking his hands every time I shake his formula in his sippy cup for him.  He thinks it's just hilarious when I say "a-shake-a-shake-a-shake-a" while shaking it.  Silly boy!), but I could never remember all of them!  I sure wish I could, because we're making great memories these days!

Cupcakes!

One tip that is well-known by parents of "picky eaters" is to involve your kid in the kitchen.  Studies have shown that if a kid helps prepare food, he is more likely to eat it.  It has to do with taking ownership and feeling pride, but for more extreme kids like Caleb, it also has to do with being exposed to the food in a neutral and friendly environment.  Every time he can touch his food, or maybe get a little on his finger and lick it, he gets that much closer to wanting to actually ingest it.

We've had problems being able to involve Caleb in his own food prep.  We can't exactly have him flip his chicken in the frying pan, or use the can opener on his can of green beans.  Pretty much everything else he eats is fresh (like fruit), so it doesn't take any prep.

Then I see all of these good moms who bake cookies with their kids and I get a little jealous.  I'd love to create treats with Caleb.  But his food restrictions come into play once again, and we're left trying to do more painting and outside play and reading and everything else that we do to remind ourselves that you really can have fun without involving food.

But, food can be fun, too, and it is a necessary part of life, and we do spend every day trying to get Caleb to eat something by mouth.  So of course I want to have fun in the kitchen with him.  It's just hard.  And the hardness of it sometimes makes me a little bitter towards food.

But then I found this gluten-free cake mix that basically contains nothing but rice flour, potato starch, xanthan gum, sugar, salt, and chemicals.  It called for butter and eggs and such, but instead I used a can of club soda that was made with nothing but water and chemicals.  (We love chemicals here!  Caleb may react to "natural flavors," but not "artificial flavors.")  Since the club soda had a bit of a bitter taste, I added some artificial almond extract (nothing but chemicals!), some sugar, and some pure cocoa powder (which is Caleb-safe).

I hushed the inner voice in me that always says, "If you don't make a mess, you don't have to clean a mess up" and let Caleb not only stir but help spoon batter into the cupcake liner!  (Alright, alright, I wasn't going to let him fill the liners, but he started to do it anyway and I didn't want to turn our fun little afternoon together into a "STOP THAT!  YOU'RE MAKING A MESS!" fest.  The whole goal was for Caleb to have fun.  So I let it happen, and I was pleasantly surprised when he dripped a tiny bit and tried to wipe it up with a paper towel. He is my son after all.)  :)

Stirring.

 Every time his hand would dip into the bowl, I would encourage him to lick it off of his fingers before cleaning it off on the towel.  He was a fan, which kind of surprised me. :D

Licking the bowl, of course! ;) 

 His first bite!  So exciting!  I made frosting by blending up pure granulated sugar and mixing it with rice milk.  Regular powdered sugar contains corn starch, which Caleb can't have.

Having leftovers the next day--he wanted me to take his picture.  :) 

 This is his "I'm biting down and this cupcake doesn't stand a chance!" face.  :)

The aftermath.  Eventually he didn't want to nibble any more (he never really took any real bites, just little nibbles), so before allowing him to get down from his seat, I told him that he had to lick his fingers.  Yes, finger-licking is highly encouraged in our house.  Again, if he can have a tiny taste of food, in a way that's fun and different, then we will eventually make progress with actual eating in a more socially acceptable way.  So licking his finger eventually led him to say, "My finger is dirty!"  So I would say, "Oh, it's dirt!  Don't lick it!  That's so gross!"  And he would lick the chocolate off and I would say, "Ewww!!  That's gross!"  We had great fun, and he actually made a dent in his cupcake!

The cupcake making went well, the cupcake eating went well, and some time we'll do it again!  Maybe we'll make some marble ones, or just vanilla, or find other artificial flavoring extracts to try to change it up.  It was fun to feel "normal" for one afternoon, and it's awesome to be able to give Caleb a little more variation on his plate.  And come November, he can have a birthday cake for only the second time in his life!

Caleb's favorite

One of Caleb's most favorite things to do is read books.  Going to the library once or twice a month is like Christmas to him!  One of his all-time favorite library books in called Hondo and Fabian.  The illustrations are so sweet, and it's a wonderfully soothing book for bedtime.  Hondo is a dog who goes to the beach to play with his friend Fred.  Fabian is his fellow pet, a cat, who stays home and plays with the baby.

Of course, Caleb has to spice it up by replacing "Hondo" for our own dog's name, Meggie.  He also replaces "Fabian" with our own cat's name, Captain Hook.  Hondo's friend, "Fred," is Auntie Jenna's dog, Sadie.  And the baby is our very own Baby Russell.

Without further ado, here is Caleb reciting his rendition of Hondo and Fabian: (he's a little quiet, but if you turn it up and enlarge it, you can see the words on the page, which will help you understand him)

Artists

Caleb wanted to color the other evening, so we let Russ have a go at it, too.  He was a big fan!

He even held his crayon properly!  (Caleb has never once held his crayon correctly.)  He is also obviously right-handed, like his brother.  I suppose I'll have to be ok with being the only southpaw in the family.  Darn.

Russell's longish attention span definitely contributed to his success with coloring.  It's a weird adjustment for me.  I'm not used to having a kid who can stick with the same activity for over two minutes!

 Then this morning we did a "craft" at the request of Mr. Cal.  Caleb painted a sun catcher on his homemade light table (which is pretty cool, if you ask me--and just ask me if you want to know how I made it and what I use it for).

 Russell colored with crayons...until he started biting the tops off of his crayons, at which point I took them away and he had a 30-minute meltdown.

Here is a video of Russell coloring for the first time.  He's got it down!  His little feet get going like that when he's especially happy.  :)  He had to get up at the end of the video to dance for a second while Caleb sang Good Time (by Owl City and Carly Rae Jepsen).

Boy's Best Friend

Caleb is growing up (*tear*), so it was about darn time we got him a decent white button-up shirt to wear to church.  It was Saturday night, and we were excited for him to wear it for the first time the next day...when we realized that he didn't have pants that matched his one and only tie.  So, I sewed him a new tie that would match his pants.  Now I need to sew him some pants to match his old tie!  And a few more ties, since they were oh so easy and insanely cute!

He was excited to wear it when we woke him up on Sunday morning.  I told him, "It's a bow tie, like Donald Duck's tie!"  He said, "No, Donald Duck's tie is red, Mommy!"  And so it is.  I should have known.

He left it on all day, and when we got home from church I was going to take pictures right away.  Then I noticed that he fell in the mud on his way to the door.  Oops.  Oh, well.

We went out to the front porch anyway, and El Capitan joined us.  Caleb is in love with this cat.  And the cat is the best cat I've ever known.  He puts up with so much from that toddler!  He's the perfect balance of affectionate and aloof.  And he's so pretty!  He's not a boring, plain ol' short hair, but his hair isn't so long that we find it everywhere.  You would never know that he naps on my bed now and then.  No pile of hair.  It's great.

So what was going to be a photo shoot to capture the adorableness of Caleb's Sunday best turned out to be a photo shoot to capture the bond between a boy and his cat.  And he happens to be wearing an adorable (yet dirty) outfit.

 I told Caleb to give Captain Hook a kiss.  So sweet!

 Then Caleb told Captain Hook to give him a kiss...and he DID!  Notice the tongue on Caleb's cheek?  How perfect!

 So much joy on that sweet little face.

Smarty Pants!

Every time Russell finds a rag or a wipe, he "wipes" up whatever is nearest to him.  The chair, the floor, the book....This is one of those milestones that took Caleb FOREVER to meet.  I always thought it was because I didn't spend enough time cleaning my house.  ;)

It's interesting to see how smart my boys are in different ways.  Caleb gets a lot of credit for being smart because he talks so much and is so witty and social.  He has an amazing memory and can learn anything that we set out to teach him.  He can command the attention of a room by laughing and asking questions and being so darn cute.  I remember his first birthday party.  He knew that the day was about him, and he soaked it up.  After his first few bites of his cake, everyone began to mingle and eat and talk among themselves, and Caleb realized that he wasn't the center of attention any more.  So instead of crying for attention (which is what most 9- to 12-month-olds would do), he burst into laughter!  The whole room noticed and thought it was adorable (it really was!) and they all laughed along.  He has always had that kind of personality.

Then the other day Russell pushed the step stool up to the wall so he could reach the light switches!  That's something that Caleb never thought to do until the past year!  Russell is very aware of his surroundings.

 He also pushed the step stool up to the kitchen table and climbed on up.  He was pretty proud of himself.  Then Caleb thought, "Hey, that's not a bad idea!"  So he climbed up, too.

Russell is also very self-aware.  For a while now he has been "helping" to put his clothes on by putting his legs up for me, stretching his arms out, etc.  Caleb still has problems with that.  He's so caught up in talking to us while we dress him that he lets his legs go into the same leg hole, or puts his arms out of the neck hole of his shirt without realizing it.  It's quite frustrating at times!  He also won't pick up his feet when I lift him out of the car seat, so they drag along and get caught in the crook of the car seat and his boots get pulled off.  Not fun to fix when he demands to put them on by himself in the parking lot in the snow and cold.

Anyway, the point of this is not to compare my kids.  I just love that they can be individuals.  They're both so smart in such different ways, and I think that's great.  I hope I can raise them to help each other, not to compete with each other.  It's just so fun to see them blossoming into individual little people with strengths and personalities and wants and dislikes.  They're so incredible in so many ways.