Friday, November 30, 2012

Russell's digestive woes

Russ was scoped the day before Thanksgiving.  Remind me never to have a medical procedure done just before a holiday.  It took a whole week to get our results back!  I was going nuts!

Here is the status of my baby boy's digestive tract, starting at the top:

A) His esophagus has 2 eosinophils per high power field.  In order to have a diagnosis of Eosinophilic Esophagitis (EoE), he must have at least 15 eos/hpf.  And there are some telltale signs of EoE when looking at the esophagus with the naked eye, such as furrowing (although I'm not entirely sure what that is...), and Russ' esophagus was beautiful.  Lovely color, nice and smooth, good blood vessels.  So his esophagus is of no concern.  Yipee!

B) His stomach appeared healthy, but the biopsies showed inflammation.  So he was diagnosed with "gastritis."  There wasn't a single eosinophil.  Hooray!

C) His duodenum was also inflamed on the biopsies (diagnosis: duodenitis), and there was something going on with the villi.  I can't remember exactly how she described the villi (which function to absorb nutrients, so when they malfunction it results in malnutrition), but she said that the abnormality was caused by reflux.  We will be starting him on a prescription reflux medication twice a day and hopefully that should be all that he needs to feel better!  Wouldn't that be nice?  But somehow I don't believe that it's going to happen.  I'm going to call the GI doctor next week to check, but everything I can find about abnormal villi is related to Celiac Disease.  He shows no signs of reflux in his esophagus and no outward symptoms, either.  And most babies with reflux (virtually all of them are born with it to a degree) outgrow it by the time they are one year old.  So why would Russell just now be refusing food to a greater extent than ever before?  It's puzzling.  But there wasn't a single eosinophil in his duodenum, which is great!  (That's where Caleb's eosinophils reside.)

D) His colon was technically considered healthy.  They only did a sigmoidoscopy, which is like a mini colonoscopy, so it's possible that they didn't get as good of an idea of what's going on in there as they could have with an entire colonoscopy.  The biopsies did show 38 eosinophils per high power field.  It is generally agreed (from what I have found) that 40 eos/hpf warrants a diagnosis of Eosinophilic Colitis (EC).  But since EC is so rare, and the "healthy" number of eosinophils in a person's digestive tract varies based on where in the country you are, there technically isn't diagnostic criteria.  Stinks, huh?  My kids are just that rare.  Well, maybe.  From what I understand (and I have a lot to learn), I very well may have 39 eos/hpf in my colon and I don't have symptoms of EC.  You may have 35.  But generally, once a person has 40, they show symptoms of EC that warrant treatment.  But really?  Russell's biopsy was two eosinophil cells short of getting diagnosed with EC.  Eosinophilic disorders are a "patchy" disease, meaning that you could take a biopsy in one spot that showed lots of eosinophils, and move over an inch and find none.  So although our GI took multiple samples (I think she may have only taken two...but I'm not sure), if it were to be done again, he might end up with a diagnosis.  Or it might show even fewer eosinophils.  It's hard to know.


Deep breath.

Our GI didn't say this, but in my mind, if the reflux meds don't help anything (ie, if he doesn't start drinking significantly more, since drinking two ounces a day is pretty darn awesome for our little anorexic baby), then we may assume he has EC.  I will either talk to our GI doctor about the possibility, or I will seek out a second opinion.  I'd rather not do that, because it might mean putting Russ under anesthesia again for more biopsies.  I would hate that.  He would hate that.  I promise, I'm not looking for a diagnosis, I'm looking for answers to why my baby doesn't want to eat and drink enough to be healthy.

Don't you hate it when it's in your child's best interest for them to suffer more in the short term so they can suffer less in the long term?

Story of my life.

Let's just hope the reflux med works and that's that.

Sunday, November 18, 2012

Russell is 11 months old!

That's almost one year!  What?  No way.  That went by way too fast!  He still seems like such a little baby to me!

At 11 months old, Russell:
  • Weighs 15lbs 15oz (on a good day).  He has only gained a few ounces in the last two months, so we're a bit worried about that
  • Wears size 2 diapers (and only has three wet diapers a day)
  • Wears size 3-6 month clothes
  • Has eight teeth and hasn't gotten a new tooth in many, many months.  Everyone who sees him feels the need to comment on how many teeth he has for being so small
  • Is still pretty bald, but is starting to get a little bit of a mullet thing goin' on.  He barely has enough blondish hair on the back of his head to "run my fingers through," so to speak, but it's an improvement!  Although, there's nothing wrong with having a little baldie :)
  • Can crawl, cruise, and has stood without holding onto something a few times for a few short seconds
  • Can crawl up and down stairs.  It is sooo nice to not have to worry about him on the stairs
  • Loves to open cupboards in the kitchen.  He isn't into clearing the shelves just for fun yet, but he knows where to find a few things that he enjoys looking at, holding, and chewing on (such as Caleb's fruit leather and Caleb's medical supplies) and will go straight for them when he has a chance
  • Loves to open and close doors--on the cupboards, baby gate, and bedrooms (but not using the door handle...obviously.  He's a wee bit too short for that).  It's nice that he has figured out how to go from crawling to sitting so quickly (he's been doing it for a while now).  He can entertain himself much better because of that.  It took Caleb f.o.r.e.v.e.r to figure that one out
  • Babbles with the consonances m, b, and y and enjoys saying "ffffff" through his teeth/lip.  He doesn't babble very much.  Most of the sounds that he makes are still strictly with vowels, although he is starting to use his vowels to make conversational sounds, which is fun
  • Loves touchy-feely books.  He knows how to turn the pages, and knows just where to put his fingers to find the textures
  • Still loves the cat like crazy
  • Looooves to dance.  He's got some groovy moves.  He also has great taste in music.  Check it out:

  • Cries like a maniac when he wakes up in the morning/from his nap.  He very rarely wakes up happy
  • Loves Caleb more than anything.  Just a touch from Caleb will make him roll in laughter.  He will literally chase Caleb all through the room, trying to head butt Caleb (his head is currently the most ticklish part of his body).  It's quite comical.  Usually Caleb pushes him away, which makes Russ laugh
  • Loves holding things in his mouth.  He isn't opposed to crawling with things in his hands (yeah, he can balance on those egg-shaped musical shaker thingies), but if he wants to hold more than what fits in his hands, he puts his toys in his mouth.  I honestly think he thinks of his mouth like a third hand.  One time when Auntie Jenna was playing with him, he had one toy in each hand and she had a toy that he wanted.  He tried to grab it with a spare finger, but couldn't grasp it, so he reached forward with his mouth and grabbed the toy.  He's pretty cool like that
  • Waves to everyone he sees
  • Smiles to everyone he sees
  • Has clapped once
  • Is ridiculously attached to his mommy.  Sometimes just giving him to Daddy will make him cry.  He turns away from everyone who reaches for him if I'm holding him.  He still follows me out of a room, and he'll cry if I leave the room too fast
  • Loves to eat our daily lunch smoothie (made with apple juice, spinach, carrots, chia seeds, peaches, strawberries, and blueberries), freeze dried baby yogurt bites, baby cheetos, and wheat toast with butter and homemade apple butter.  He enjoys sinking his teeth into fresh apples, although he really doesn't eat them.  He also loves to nurse (only 2-3x/day), although I'm 99 percent sure that my milk is 99 percent dried up
  • HATES pasta, eggs, and hot dogs (the first time I offered them to him, he ate 1.5 hot dogs!  Since then, he won't even put one in his mouth).  Most other foods (like baby cereal, jarred baby food, and "real" food) he will take a bite or two of, and then turn his head away and absolutely refuse to eat any more.  He often puts food in his mouth, chews on it for a second, and spits it out.  If you sneak something in his mouth that he doesn't want, he will spit it out
  • Drinks formula from a specific type of sippy cup and will take some water from an open cup or a straw cup, but doesn't drink much.  The most that he has ever drank in a day was 7oz.  That was incredible.  He averages about 2oz.  It's not rare for a day to go by without him drinking any formula.  Remember how I said that he isn't getting anything from nursing?  Yeah.  It's bad.  Remember this post from when Caleb was 13 months old (10 months adjusted)?  Caleb was in really, really bad shape with his eating.  But the least that he ever drank in a day was 7oz.  That's the most that Russ has ever had.  And I could always get Caleb to eat just a little bit more by distracting him.  Distractions don't work for Russell.  That's why Russ had a swallow study a few weeks ago.  We wanted to make sure that his lack of drinking wasn't due to aspiration, since he often coughs while he drinks.  His swallow study showed that everything was fine.  And that's why Russ is having a scope done next week.  At this point, I'm expecting him to be diagnosed with an eosinophilic disorder.  Based on some of his symptoms (coughing while drinking, bloating, and alternating constipation and diarrhea with mucous in his stools), I wouldn't be surprised if they found eosinophils in his esophagus and/or his colon.  That would make things quite different from Caleb's type of EGID.  Tonight Nate asked me, "So, do you think he'll get a feeding tube if he does have eosinophils?"  Who knows.  I would love it if he didn't need one.  But he can't be dehydrated forever.  Hopefully if we could get rid of the offending foods then he would feel well enough to want to drink, so we could avoid the tube.  But let's be honest.  I'm not counting on anything right now.  All I know for sure is that if he needed a feeding tube, I would want to skip the NG tube and go straight to the g-tube.  There is no way Russell would stand to have a tube in his nose and taped to his face.
  • Will most likely be getting feeding therapy (and probably speech therapy at the same time, by the same therapist) in a few months.  The nice thing about that is that we would use the same feeding therapist who has been coming to our house since Caleb was about 4 months old!  We love her!
  • Is getting more and more fun as his personality develops more.  Today we brought him to a restaurant for the first time since he has been able to eat solid foods, and he had so much fun smiling at everyone!  He used to be very antisocial (to the point of me losing sleep over the possibility of him having autism), but now he has become quite the charmer!  He loves other babies, and likes to "talk" to them.  He has a BFF named Henry.  Every time they see each other, they smile and laugh.  It's adorable.  Henry's older brother is Caleb's BFF, so it's perfect!

I was canning apple butter one day with apples from our trees while Russell was playing in the kitchen.  He started fishing in my bucket of apples and pulled out the smallest apple (with lots of leaves on its stem) and was very happy to chew on it all afternoon.

Saturday, November 17, 2012

My boy is 3!

You heard right!  My little 27-weeker baby boy is now a strapping 3-year-old!  He's pretty much at the end of toddlerhood and entering preschool-agedness.  Weird.  Before I know it, I'll be sending him off to kindergarten!  And then HIGH SCHOOL!  Oh dear.  I'm not ready for this.  I thoroughly enjoyed the terrific twos and I'm thoroughly scared of the terrible threes.  I've had a glimpse of this new phase and it's going to take patience.  Thank goodness this child of mine is so wonderful in so many ways!  And on the days where his wonderfulness is masked by his new-found independence, stubbornness, and unlimited energy, at least he's cute.  ;)

At 3 years old, Caleb:
  • Weighs 24lbs 2oz.  Nowhere near the charts, and he has only gained 3lbs 1oz in the last year.  That's really not good.  His weight was completely stagnant from June to October and in the last month he has finally a pound.  Let's hope he doesn't lose it...again!
  • Is 34.75 inches tall!  That's somewhere around the 3-5th percentile!  On the charts!  Woot!
  • Wears a lot of size 18 month and 24 month clothes.  Most 18 month pants are getting too short, but the waist is still loose enough that his pants fall down.  I remember the day when he learned how to pull up his own pants.  That was a big deal!  Most 18 month shirts are slightly too short, too, and show too much of his belly when paired with pants that tend to fall down.  Ha!  But 24 month/2T shirts just seem so baggy!
  • Wears size 7-8 shoes.  His feet keep growing when the rest of him stops!
  • Wears size 4 diapers.  If I didn't have a baby to take care of, I would say that Caleb is potty trained.  But he's kind of high maintenance in the bathroom, so we're taking a break with that.  But he did wear underwear for the past month and did awesome with it.  Sometimes he would have one or two accidents a day, but sometimes he wouldn't have any.  He could go three hours without using the bathroom if we left the house.  Pretty great!
  • Still rides rear facing in his car seat.  Woohoo!  Call us safe!  There's no reason to turn him around yet.  He's still so small and fits just fine how he is.  And he really enjoys car rides.  He has never, not once, fought being put in his car seat.  Not like Russell does.  ;)  We have no immediate plans to turn him around.  We're kind of just waiting until we need to take a long car ride, because the passenger side seat in the front has to be pushed pretty far forward in order to fit Caleb's car seat in the back seat at the proper angle.  Whoever rides in that seat for our next long car ride ( will appreciate the leg room if we turn Caleb forward facing
  • Still sleeps in his crib.  I plan on leaving him there until he can climb out.  Once, just a week or two ago, he kind of fell out (I have no idea how...I was in the room, but my back was turned to him).  He landed on his back and it seemed to startle him.  He was scared enough that I don't think he'll try getting out any time soon.  Haha!  Caleb sure is different from the "regular" child in a lot of ways, I guess
  • Tested in the 99th percentile for ADHD type behaviors.  Although his ability to sit still for very long is horrible, he is surprisingly compliant.  The therapists who evaluated him were impressed that he was so easily redirected.  He just needs a lot of redirection because his busy brain and body tend to wander.  I'm able to teach him a lot, regardless, but I worry about when he starts school and he won't have one-on-one attention
  • Can say pretty much anything he wants, except his own name.  He says it "Caybid."  I think it's rather cute and I often find myself calling him Caybid.  This is a funny conversation that Auntie Jenna once had with him:
    • JB: Is your name Caleb or Caybid?
    • Him: It's Caybid!
    • JB: So it's Caybid?
    • Him: No, it's Caybid!
    • JB: Right, so it's Caybid.
    • Him: NO!  It's....We call me Cal!
  • Calls Russell "Your Baby," as in, the baby who belongs to his mommy.  "Mommy, Your Baby is crying."  "Mommy, Your Baby is so cute!"  He also calls him Russell, but Your Baby is just so cute!
  • Has a favorite store: Hobby Lobby.  If you ask him, he says, "It has fabric...and crafts...and grapes...and horses...."  He likes the displays near the front with all of the figurines and decorations on them, which coincidentally are garnished with fake grapes.  I think he would love it if I bought some fake grapes some day
  • Has a BFF named Nash.  Little boys don't get much cuter than this

  • Knows lots of songs.  Not just the classic children's songs, like Twinkle Twinkle Little Star, All the Pretty Little Horses, Rockabye Baby, etc, but the cool ones.  He knows (and loves): Paradise by Coldplay, We are Never Ever Ever Getting Back Together by Taylor Swift, Waka Waka (This Time for Africa) by Shakira, Wide Awake and Firework by Katy Perry, Gangnam Style, and many others.  He can recognize any Owl City song by the sound of it.  He can identify all of the songs I listed by just hearing the first few notes, before the words start.  This kid has seriously good taste.  Seriously.  And he can sing very well, too.  He doesn't always get every note just right, but he often does.  It makes me proud.  :)  Most people these days don't know it, but I was quite the singer in my younger years.  I would love it if my children could be singers, too
  • Watched the music video for Baby by Justin Bieber once and now sings it all of the time.  The only thing is, he thinks the words are "David."  So he sings, "David, David, David, oooo!"
  • Will often say, "Turn it up!" when we're driving in the car and he hears a song that he likes.  A few times he has said, "Turn it off.  I want to talk to you."  :)
  • Still has many, many books memorized.  He used to just memorize the last part of each phrase, and we would prompt him by saying the first part of the phrase, but now he gets mad if we try to read any part of the books that he knows.  He says, "I read it!"
  • "I do it all by myself!" is a phrase that I hear many, many times each day.  He's still good at asking for help when he needs it, but when he doesn't need help he seems offended at any offer for help.  He also says, "No, I don't need it!" when we try to get him to do something that he doesn't want to do, like put his shoes on before going outside.  Sorry, Mister, but you do need your shoes on if you're going to go outside.  He also like to say, "I don't want to!  I DON'T!"  It's a cute way of asserting his independence, so I don't mind it so much
  • Can label the emotion "frustrated."  If he has trouble doing something, he stomps his feet and whines and says, "I'm frustrated!"  
  • Has figured out how to do a "thumbs up!"  He also figured out that he can wiggle his toes.  That was a very exciting discovery for him.  He figured it out on his own
  • Is so amazing with all of the new things that he does and says every day!  I love getting a glimpse into his incredible mind.  I'm so blessed to have had him as my son for three years!  I LOVE THIS KID!

Here is a video of a little conversation that I had with Caleb the day before his birthday.  It's long, but cute.  If you're feeling impatient (or if you don't happen to think he's as cute as I think he is ;)), you can skip to 5 minutes.  That's my favorite part.  :)

Wednesday, November 7, 2012

Pumpkin Patch

Every October for the last three years (aka, for Caleb's entire life) we have gone to a different pumpkin patch with our friends.




I love this tradition.  I think the boys do, too.


A few weeks ago, I got the kids up in the morning and while I was changing Russell, Caleb looked out the window and informed me that it had snowed.  So, of course, what do we do?  We spend 20 minutes finding and putting on warm clothes so we can spend 20 minutes outside playing in it!  It was magical.  Caleb rather immediately tasted some snow (who is this kid??  He doesn't like putting anything but his fingers in his mouth!) and informed me that it, "Tastes juicy!"  Russell tasted some, too.  We built a tiny snowman and put it on the porch.  It lasted past nap time (barely), which was fortunate, because the rest of the snow had melted while my children slumbered.

Here are the reactions that my little cuties had:

Russell hardly ever vocalizes that much!  (Crying doesn't count....)  He was quite conversational and quite adorable!