Sunday, April 28, 2013

I'm obsessed with taking pictures of my kids eating.

I used to take videos of Russell holding and downing a sippy cup of formula, because it was something Caleb never did willingly, and it wowed me every time.  I'm weird, I know.

Hot dogs on bread with ketchup (which he didn't actually eat any of, but he had a great time playing with it):
 Eating a turkey sandwich, just like Fabian the cat does in his favorite book, Hondo and Fabian:
 Spaghetti with sauce:
 He saw Auntie get out some pasta for lunch, so he got his leftover spaghetti out of the fridge and sat on the arm of the couch next to her and they ate together:
 Chocolate chip pancakes:
 Macaroni and cheese!  That's like...regular toddler food!:
 More mac'n'cheese:
 Scraping the jam off of a piece of bread (which he wouldn't eat) with a freeze dried apple (which he ate a few of):
 Pizza!  For real!  He "decorated" it himself!  He did a great job eating the toppings:
 Olive finger. *snicker*:
 Russell's olive finger, too:
 Nate got something from Burger King with a coupon, but the only thing Caleb could have from it was the ketchup.  So he ate (ok, more like tasted) it like this:
 Making cookies together for the first time!:
 The beautiful cookies.  They actually tasted pretty good, too!:
 Steak, baked potatoes, and green beans.  A real cowboy meal.  Granddad would be proud:
My all-time favorite dessert place is Maui Chill.  It's about two miles from our house, and it's owned by some friends of ours.  My sister and I go there at least once a week and a few days ago we discovered that there is a flavor of sorbet that Caleb can have!  Here he is eating mango sorbet at Maui Chill:
 He finished his first 3 ounces in no time at all (seriously, he didn't even pause to talk!!!) and this is him declaring "I want more!"
So we got him seconds.  :)  Can you blame me for spoiling him??

And all of these things were free of dairy, wheat, soy, eggs, peanuts, tree nuts, fish, and shellfish.  Pretty amazing, huh?


I think other moms pack goldfish crackers and fruit snacks in their diaper bags.  I'm most likely to pack olives and mini pepperonis.  Both kids love those like crazy.  (I don't.)  Caleb's other favorite foods are cookies and turkey sandwich meat.  He isn't a big fan of bread, bananas, or hot dogs.  We have to push him, but he will drink 10-15oz of chocolate coconut milk mixed with rice milk each day.  The rice milk is higher in calories and calcium and costs less while the chocolate coconut milk is higher in fat and iron.  He gets 5oz of hypoallergenic medical formula mixed with 5oz of rice milk (straight formula makes him throw up) with his feeding pump at 60ml/hour while he sleeps at night plus a few quick ounces through his tube right before bed.  He lost half a pound in the first few days with decreased tube feedings, but he has now gained back almost all of it!  That's pretty amazing!

This is a strange and wonderful world that we're living in!  We're certainly enjoying the new changes.

Being a second child

He points to it and says "potty" while trying to pull down his pants.  Then he sits his little booty down on it and says "cheese."

I just love that irresistible smile.

Friday, April 26, 2013

Home Improvements

Well, it's April and I'm just now telling you about my New Year's Resolutions.

I have the same resolutions every year.  Read my scriptures and write in my journal every day.  And I've done it every day for 10 or 11 years now.  I don't want to break the streak, so I resolve to keep at it.  ;)

But this year I realized a few important things about my home:
a) My boys and I spend a lot of time in our home, and I want it to be a comfortable place to be.
b) I hate that embarrassed feeling when someone comes over and you have to explain, "Well, our house is certainly a fixer upper...it's our starter home...we bought it for the land, not the interior...."  I want to be relaxed and appreciate my company when they come over, not worry about their impression of our home.
c) It's my job to make our home comfortable and inviting.
d) I want to be proud of our house.  Plain and simple.  I'm proud of where we are in life--both with college degrees, a house, two beautiful children, a good job, and no debt other than our mortgage.  We're livin' the dream!  It's just hard to remember that when I'm home all day in a home where I don't feel that comfortable...which brings us back to the beginning.

So.  I resolved to make our home a place that I can be proud of.  And with only a third of the year gone, I must say things are coming along!

Before making this resolution, there were many things that we had already done to improve our house from the condition it was in when we first bought it.  We:

  • installed a dishwasher
  • replaced the fridge (which broke)
  • replaced the microwave (which also broke) (all of our kitchen appliances are now the same color and even though they aren't the same brand, the look great together!  Yay!)
  • replaced two exterior doors
  • sanded and painted the front porch railing
  • sanded and stained the front porch flooring
  • cleaned up a lot of leftover junk in the back yard (lots!)
  • built a shed for the horses and their hay
  • finished the chain link fence to keep the horses in the pasture and out of the yard
  • removed the upper cupboards in the living room (I wouldn't be surprised if the former owners found those cupboards at the dump and thought, Hey!  Let's put these in our living room!  Not my favorite feature.)
  • painted all three upstairs bedrooms
  • sewed a lot of stuff (which I will blog about!)
  • completely renovated the powder room on the main floor (which I will blog about...you're gonna love it!)
  • completely renovated a downstairs bedroom (Jenna did most of the work...I would blog about it if I had gotten before pictures.  It was quite the transformation!)
  • and more....
Things I've done recently that I plan to blog about:
  • put up a beadboard backsplash in the kitchen
  • transformed the dining room (including painting the trim)
  • painted, finished the sheet rock inside, and fixed the doors (sizes and latching) on the built-ins
Things I still plan to do (and blog about) this year:
  • paint the play room/living room
  • refinish the old hardwood floors
  • replace the old, original windows
  • find a way to organize the kitchen so as to decrease the clutter
  • put baseboards and door trim up where it is lacking (unfortunately, it's missing in a lot of rooms!)
  • replace the last yucky exterior door
  • paint the front door a fun color (I'm thinking plum!)
  • replace the vinyl shutters with homemade black board and batten shutters
  • paint the rest of the green exterior trim black to match the new shutters
It's pretty comforting to see that my "accomplished" list is bigger than my "to-do" list!  And I've already had two people come into my home and say, "Wow!  It looks so different!  I love it!"  One of those people hadn't been here for over 10 years, and he said that when he last came here it was in baaaad shape.  He said we've done great things to it.  That makes me feel pretty good.  :)  I can't wait for everyone who comes here to feel invited, comfortable, and maybe even a little bit inspired by my tastes.  And I can't wait for you all to see it documended, too.

Home Improvements: Reading Castle

Our living room/play room has been evolving since the day we moved in.  Thankfully.  It needed to evolve, and it's still got a ways to go.

We were recently left with a big corner space between the couches that looked too empty.  I had something awesome in mind to fill it with.

This was my inspiration:

although it wasn't quite what I really wanted for my boys.  So I just made my own adjustments and ended up with this:


Isn't it glorious?!  We call it the "Reading Castle."  Very boyish and fun.  I also bought some Ikea spice racks and painted them brown and put them on the wall to hold books, because we must have organized books near the reading castle.  (If you use the Ikea spice racks as book shelves, make sure to put in wall anchors in case your little boy thinks it's a good idea to use it as a step up onto the couch.)

It cost less than $15 to make.  Pretty awesome, considering you can buy them here for hundreds of dollars.  I just bought three twin sized bed sheets at Walmart and used an old hula hoop that we had laying around.  For the castle banner, I used scrap fabric, binding from the fabric store, and a fleur de lis stencil from the craft store.  To hang it, I used an old hook that we had laying around and anchored it into the ceiling with a heavy-duty anchor.

I really tried to simplify the design, since I'm a bit of a corner-cutter.  ;)  I just eyeballed how long to make the sides hang (I wanted them to drape on the ground just a bit) and instead of cutting out cone-shaped pieces for the top part (because my hula hoop wasn't the same size as the inspiration, and I didn't feel like doing math), I just cut out a circle a bit bigger than the hula hoop.  I didn't do the thread-pulling type of gathering with the blue fabric...I just folded it and pushed it under the machine foot as I went.  Not the best technique, but I didn't figure out how to properly gather until last week.  Oops.  Better late than never!  But I like my top better than my inspiration top, so it's all good.

The biggest problem that I ran into was pinning the top piece and the sides together.  It's a bit difficult to sew something in that shape.  But it's more difficult when you're left-handed and set it all up to sew from the wrong direction.  I ended up sewing it all together backwards.  Yes, I held down the reverse button on my machine for the whole thing.  What a pain.

But I love it.  And the boys love it.  And I love that it encourages reading, and helps with sensory processing, and looks cute in the corner of the living room.



Love.

Linking here, to one of my favorite home improvement bloggers!
TDC Before and After

Sunday, April 14, 2013

Communicatin'

Receptive communication skills are my favorite milestone so far, with both of my boys.  Oh, how fun it is to see my babies understand me!  I can talk to them and ask them questions and they can answer me with words or gestures.  It's very handy!  Russell has been blowing me away with his receptive communication skills lately.  Here are some things that he has done:
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Nate had just finished giving Caleb a tube feeding in the living room, so he handed Russell Caleb's tubes and said, "Go bring these to Mommy."  I was in the kitchen, and before I know it I hear Russ behind me saying, "Money Money Money Money," while bringing Caleb's tubes over to me!  Then he went back to the living room and Nate gave him Caleb's formula bottle and told him to bring it to me, and it happened again!  "Money Money Money Money," and there's my little baby waddling over to me in the kitchen, bottle in hand!
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It was almost lunch time, so I said to Caleb, "Do you want a hot dog or a turkey sandwich?"  Russell eagerly looked at me and excitedly made the sign for "eat" over and over, stood up, and started walking as fast as he could to the dining room for lunch!
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Every time we're talking to someone (at our house, at church, at someone else's house, etc) and we start wrapping up the conversation by saying something like, "Well, thanks for coming," or "I'll see you next time," Russell immediately stops what he's doing to say, "Bye-bye!  Bye-bye!" while waving his little hand at them!
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Russell knows that when he wants something he has to say or sign "please."  He'll be wining at my feet for something and all I have to say is, "What do you say?"  He knows that the answer is "please!"
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Today as I was putting Russell in his high chair for lunch, he saw a little statue of a family on the ledge on the wall.  He pointed to it and said, "Dodjie!"  (That's how he says Daddy.)  Then, about five minutes later, as I was feeding him, he looked at me and said, "Dodjie?  Dodjie?"  I couldn't tell if he meant Daddy or doggy, because he pronounces them in exactly the same way, so I said, "Doggy?  The doggy is right there" (pointing to the dog a few feet away).  Russell looked at the dog and then pointed to the statue and said, "Dodjie" to clarify that he was asking about Daddy, not the dog!  I told him that Daddy and Caleb were walking home and that they'd be here any minute.  And that was the end of it.  He just wanted to know where Daddy was!
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Friday, April 12, 2013

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.

Wednesday, April 10, 2013

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!