Tuesday, December 4, 2012

Proud Mommy Moment: Operation Smile

Caleb saw this commercial a few weeks ago.  Ever since, he has been talking about the "babies with owies on their lips."  I told him that maybe he could draw them a picture and mail it to them to make them happy.  I also told him that he could give them some money to help them pay for surgery so that their owies can go bye-bye.  He picked all of the coins from his bank (two quarters and a dime) and one dollar bill to mail to them.

I asked him what he wanted to say in his letter, and he said, "A."  Well...that's a letter, all right!  So together we came up with this "message" for them:

Did you know that $240 is all it takes to give one potentially life-saving surgery?  1 in 10 babies born with a cleft lip/palate dies in their first year.  That's because they can't suck, so they can't eat.  I know what it's like to have a baby who can't eat.  It breaks my heart to think that so many babies can die of starvation.

Nate's employer matches charitable contributions, so we donated $120 and they donated $120.  So together we may have saved a life!  If you want to help the babies with owies on their lips, you can go here.  It feels so good to do it.

And it feels so good to be teaching my small child to think about others and to give of himself to help them feel better.  I hope I can continue to use these opportunities to teach my boys, and I hope they continue to love to give.

Russell's new tricks

Don't you just love it when babies develop their receptive communication skills?  I think it's my favorite.  :)

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 (ahem...me) 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!

Friday, October 26, 2012

My dysfunctional relationship with food.

I hate food.  

I hate what it's done to my family.  I hate that my son can't have it.  I hate that he doesn't want it.  I hate that he needs it.  I hate what it's like to see the food that I worked so hard to get in my son come right back out.  I hate how it makes my son feel.  Sometimes, I hate how it makes me feel.  I hate that it's everywhere.  I hate how food plays a central role in every single holiday.  I hate how it feels to see and smell food when you're not hungry.  I hate that it's trendy to make food look attractive.  I hate that everyone says, "The kitchen is the most important room in the home."  I hate that.  I hate that everyone's suggestion for increasing family unity is to have meals together.  I hate that I need food.  I hate that I depend on food physically and sometimes emotionally, too.  I hate that I actually enjoy food.  I hate that I enjoy food that my son can't have.  I hate the power that it has over me.

I love food.

I love how it tastes.  I love how it feels to eat something savory, just when you crave it.  I love how it feels to eat something sweet, just when you crave it.  I love how it feels to crave something healthy.  I love creating something beautiful with food.  I love the recognition I receive when I create something beautiful and delicious.

Maybe some day food and I can have a better relationship.  I think it will take time.

Tuesday, October 2, 2012


On Saturday we got a call from our neighbor who is a nursery leader at Church.  She is a school teacher and had raised caterpillar eggs.  Most of them had hatched out of their chrysalises by Saturday afternoon and were ready to be set free.  She was going to set them free with the toddlers during nursery the next day, but the cage was getting crowded and they were ready to go!

She was so thoughtful and called a handful of families in our neighborhood to come and watch.  We were so excited!  When we got there she started giving butterflies to all of the kids to hold, and Caleb absolutely refused to hold one!  Alas, we had finally found an animal that Caleb was scared of!  HA!  

So I would hold one while Caleb was on my lap.  He had a lot of fun looking at them and watching the other kids holding them.  But three times he refused to hold one.  We were about to give up when the butterfly on my hand flew onto Caleb's hand!  He seemed at that point to be too scared to move, so he just stood there, looking at it.

These pictures, taken in succession, tell the whole story:

Hmmm...I don't know about this!

Oh...well, it is kinda soft....

Mommy, take it off!

Mommy: What should we name the butterfly?
Caleb: Hmmm....

Its name is...is....

Ah!  It flew onto my head!!!!!

Silly butterfly!

Butterflies everywhere!

Butterflies are fun!

He's my friend.

While hanging out on Caleb's head, the butterfly was drying out so he would be ready to fly.  He left some juices from his wings in Caleb's hair!  It was such a fun, unique experience!  We have the most thoughtful neighbors to think to invite us to do something like this.  I hope Caleb remembers it forever.  I know I will!

Thursday, September 27, 2012

Russell is 9 months old!

My baby is growing up!  I can't believe that I only have three months to plan his first birthday party!  Ahhh!

At 9 months old, Russell:

  • Weighs 15lbs 13.5oz!  He's gaining really well and staying on his curve, although his curve is still below the charts
  • Measures 27 inches, which is in the 10th percentile!  Yay!
  • Wears size 2 diapers
  • Still fits in most 0-3 month clothes but should really be moved up to 3-6 month clothes...I just have to get around to washing them.  Blah
  • Has eight teeth (four on the top and four on the bottom) and drools a decent amount, but hasn't gotten a new tooth for a while.  The pediatrician says he's likely to lose his first tooth before starting kindergarten since they came in so early
  • Has mastered the "classic crawl," and that little wiggling bottom is just the cutest thing I've ever seen!
  • Goes from crawling to sitting to crawling all of the time while playing
  • Can crawl up stairs
  • Can and does pull himself up on everything
  • Has taken a few "cruising" steps while holding onto furniture, but only when he is very motivated to get to something that's just out of reach.  The doctor said he'll probably be walking by his first birthday, but he doesn't bounce on his legs (he keeps his knees locked when he's standing, just like Caleb did) so I wouldn't be surprised if it took him a little longer
  • Enjoys holding remotes and other electronics more than most toys.  In fact, I can't nurse him on the couch if there is a remote within sight, because it is just too distracting
  • Also loves shoes.  Especially putting shoes in his mouth.  And since Caleb is obsessed with wearing everyone's shoes around the house, there is always a shoe within reach for Russell to chew on.  Yuck
  • Follows his brother everywhere, and is super duper excited to see him after they've been apart (such as after a nap)
  • Has a grasp on object permanence--he still freaks out if I leave his sight, but he will follow me out of a room (while freaking out, of course)
  • Enjoys peek-a-boo
  • Is kind of starting to play the "How Big Are You?" game--I ask him how big he is and he puts his hands up in the air and we say, "SO BIG!"  We usually practice with him while he's in his high chair, so he often just randomly throws his hands in the air during meal time
  • Kind of waves "hello"...it's a little bit hit and miss
  • Will mimic people when they cough
  • Rarely makes sounds (other than crying).  He will say, "Yayaya," "Ba," and "Ma."  But he doesn't string consonant sounds together (Bababababa) other than a few ya's, and even then it isn't in a conversational way.  We're a bit concerned about his lack of vocalization
  • Gets "cognitive development therapy" twice a month.  So far his therapist has only come over twice, and he isn't very responsive to her.  Right now we're mostly trying to get him to mimic us with actions and sounds, so she'll bang a toy against the floor and wait for Russell to do it, too.  He does mimic simple actions, but mostly he just likes to do his own thing (or do what Caleb is doing)
  • Is doing well eating solids except for a few times a week when he refuses to eat his baby cereal.  At his 9-month appointment they checked his iron levels and found that he is slightly anemic (weird) and said just to make sure he gets enough fortified baby cereal.  But he gets at least as much cereal as Caleb gets through his tube and even with bleeding in his stomach Caleb isn't anemic...so it's weird.  So Russell is anemic even when he is getting at least 90 percent of the iron that he needs daily
  • Loves, loves, loves to nurse, but doesn't nurse for long any more.  I always hear people saying things about "growth spurts" for their babies, and neither of my kids has ever had a growth spurt (other than Caleb when he got his feeding tube, haha).  Russell is very attached to me, and when it's about time to nurse I can't hold him without him trying to turn around and eat.  But lately he has been sleeping through the night (YAY!), and I'm talkin' 9-13 hours straight, and when I wake up I can hardly tell that it's been that long since he ate.  So I think my supply is tapering, and he isn't able to increase it.  I hate to think that I may be weaning him soon (since he loves nursing ever so much), but I don't know if I'll have much of a choice.  The problem is this: he will not drink anything that doesn't come from my breasts.  Seriously.  We've been trying to get him to take a sippy cup, a bottle, an open cup...nothing.  And although his mouth is still moist, his lips are dry.  And he only has about four wet diapers a day, one of which is very wet and three of which are barely wet at all.  I just don't know what we're going to do about this
  • Is always interested in closing the baby gate for some reason
  • Loves to dance to music.  Seriously one of the cutest things I've ever seen
  • Gives the sweetest, drooliest kisses :)
  • Has an oral fixation, I swear.  He doesn't like to teethe on toys, he likes to hold them in his mouth while he's playing with other toys.  Most of the time he can be found crawling all around the house with a toy held in his mouth
  • Has a killer pincer grasp, but doesn't always know when it's more appropriate to grasp things with his whole hand rather than his pointer finger and thumb.  Kinda funny to see him try to pick up something big with his pincer grasp!
  • Absolutely freaks out when he hears another baby or child cry or whine.  He cries inconsolably for many minutes and is then on edge for many minutes.  If he hears another cry or whine, it starts all over again.  He had an entire waiting room at the GI doctor's office cracking up when a little boy clear on the other side of the room would barely whine for just a second.  Three times that little boy whined, and three times my baby boy broke down.  It happens in the mother's lounge at church almost every week.  He doesn't react one bit to loud noises such as the blender or vacuum, but he is very, very sensitive to the cries of others.
  • Is all together a very content and happy baby!  As long as he's not hungry or tired, he's super chill.  He doesn't mind just sitting on my lap, playing with a toy and watching what's going on around him.  It's nice (and weird) to have a kid who is able to sit still.  :)

Saturday, September 1, 2012

Crazy Doctor Week: Caleb's Medical Status

Last week, on Friday, Nate and Caleb went with Grandma and Auntie to the Brigham City Temple open house.  Russell and I were planning on going with, but since he was sick we stayed home and had a pajama day.  Nate was really looking forward to showing Caleb the Temple, since he loves looking at pictures of them, singing the Temple song, and gets so excited every time we drive by the nearest temple.  So they went to Grandma's house for lunch, after which Caleb threw up.  It didn't seem like a big deal, because he has been throwing up once a day lately.  But then he fell asleep in the car, and it wasn't even nap time yet!  Then, once they were in the Temple, he wanted to be carried everywhere.  This was clearly not the Crazy Cal that we are used to.  After touring the first little part of the Temple, they headed upstairs.  While close to the lobby, Nate recognized the warning signs and somehow communicated to the tour guide that Caleb was going to throw up.  She pointed to where the bathroom was and tried to help him over to it, but Nate knew they only had seconds to get to a "vomit-safe spot" and between him and the bathroom was carpet.  [You may not think much of that small fact, but when you deal with vomit throughout your house on a regular basis it sure makes you glad that the majority of your house is hardwood floors and/or laminate.]  So, Nate rushed to the nearest spot of tile, which thankfully was very close, and, being the wonderful hero that he is, sacrificed himself for the sake of the beautiful, new, clean temple.  Yes, he caught most of the vomit on his white church shirt, although of course some of it landed on the tile.  He was covered.  And he threw away that shirt when he got home.  No point in trying to clean it, he said.  It was a lost cause.

So, Caleb and Nate had to spend the next little while waiting for their tour group to get back before they could go, and then they had to spend the next hour in the car in their vomit-covered clothes.  Caleb fell asleep in the car again, and once they got home he dry heaved many times.  We put him on his feeding pump running clear gatorade into his stomach at 45ml/hour all night.  He slept for 15 hours!  He normally sleeps for 13 hours.  When I got him up, I detached his pump and he fell asleep on the couch, which he hasn't done in probably about a year!  So I thought to myself, "Self, I'm going to give him a few ounces of rice milk to see if the extra nutrients and calories, although gentle on his stomach, will give him some energy."  So I hooked up his extension and "vented" his stomach (letting his stomach contents into the extension tube; we do it to get any air out of his stomach and to check if he is digesting his food fast enough) and what did I see?  Blood.

I've seen specks of blood in his extension tube before, which can be attributed to irritation, but this looked like diluted coke.  The blood, paired with his symptoms, was very concerning, so we packed up right away and dropped Russell off at Grandma's and Grandpa's and headed straight to the Children's Hospital.  [We have learned never to take a complex child to the local Emergency Room.  They are really bad at putting IVs into dehydrated children's veins and they never seem to know what to do if the answer isn't obvious.  And they don't have access to GI doctors.  So the Children's Hospital it was.]

We got there and Caleb was so brave.  He enjoyed "I Have a Dream" from Tangled while they put his IV in.    They ran the regular blood tests and everything came back normal except for his blood sugar.  A "healthy" blood sugar level is 70-100, but Caleb's was at 40!  So they immediately gave him sugar water and a few hours later checked his blood sugar again.  It was at 68, so they gave him more sugar water and called it good.  His blood pressure was on the low end of normal, which was slightly concerning to the doctors.  They decided to admit him to the hospital based mainly on his appearance--he was so, so lethargic.

He had retched many times that morning, but after being admitted he was able to keep food down.  We put him on rice milk through his pump and he slowly got better and better.  By the next afternoon they discharged him and we went home!

They were saying that it was most likely a virus that made him throw up, but since he didn't have diarrhea (in fact, he was constipated) they said that the virus most likely caused temporary gastroparisis, which is where the gut literally becomes paralyzed.  They said that the blood must have been from the irritation of throwing up so much and the low blood sugar was from not being able to keep much down (although he kept down over 20oz of gatorade throughout the evening and night before we went to the ER, which should have helped his blood sugar, but didn't).

But I'm not buying it.  It's normal for him to be constipated to the degree which he was, and although recently it was normal for him to throw up once a day, in the past it was completely normal for him to throw up three times a day.  And he never had blood in his stomach or problems with low blood sugar (that we know of).  And no one else in our family caught his "virus."  I think it was all related to Caleb's digestive problems, most likely the mystery that causes him to vomit so much.

To me, the symptoms mimic FPIES (Food Protein Induced Entercolitis Syndrom).  The only problem is that we micromanage Caleb's diet to a very, very strong degree and we know that there is no way that he ingested a new food that he could have reacted to.  So it's a mystery, once again.

So, we scheduled a follow-up scope with the GI doctor.  But just a day after discharge, Caleb caught Russell's cold.  I gave him the only benadryl that I could find without food dye, but it turns out that one of the inactive ingredients is natural banana flavor.  So, although I only gave him one dose, it is best to wait a few weeks for any eosinophils that it may have caused to be out of his system before we scope.  And he can't have such respiratory problems if he is going to go under anesthesia, so we will have to wait anyway.  Hopefully we won't have to wait more than two weeks.

While Caleb was still suffering the aftereffects of his vomiting/bleeding/blood sugar/blood pressure problem and simultaneously dealing with a horrible cold, I have never seen him so sick.  He was pale.  He had no energy.  He couldn't even talk fast.  He didn't torment the cat or the baby.  He got skinnier by the day.  He would wake up many times each night coughing, crying, "Daddy/Mommy, hold me."  I would lay awake at night, trying to prepare myself to see how wasted away he would look the next day.  I can honestly say that I've never been so worried for his life.  Not even when he was a tiny preemie on life support.  I knew then that he would get better, but now I just don't know what the future holds.  Will he always vomit?  Just how much weight can he lose?  He has only gained 1lb 5.5oz in the last nine months.  Two months ago he weighed 9.5oz more than he does now.  He only weighs 22lbs 6.5oz, despite all of our efforts to get him to gain weight.  We have now talked to three dietitians and they all say we're doing a great job.  What comes next?  How long will it take him to gain back all of the weight he has lost?  I wish I knew.
This was Caleb a month ago, when he weighed six full ounces more than he does now.  I want to cry every time I look at this.  It breaks my heart every time I see him without his shirt on.

Thankfully he seems like his old self today, a whole week after his hospital stay.  He still has a cold, but his color and his energy are back.  I missed my Caleb.

Now we need some answers, and maybe a new plan.  I can't live with the stress of it all, and Caleb can't weigh less than 23 pounds forever!  We have looked into what it will take to get him seen by a specialist in Denver, and as soon as I can muster the energy and time, I hope to get his medical records sent there for them to review.  But that's going to be quite the feat with his medical history.  Whew!  Wish me luck.  We need to get this boy feeling better!

Crazy Doctor Week: Russell's Medical Status

Last week our 3.5-month wait for Russell to see the GI specialist was over!  He is now in the "system" and is a patient of the same GI specialist that we use for Caleb.  Since she knows us rather well (yeah, I'm pretty sure Caleb is a very complex case), and she knew we were coming (I told her the week before when talking to her on the phone in regards to some of Caleb's problems), she was very sad to see that we were experiencing problems with our littlest little one.

One thing that I love about this GI is her notes.  She gives me a copy of everything that she observes, thinks, and does in regards to my children.  Here is what she had to say about Russell, straight from her notes:

Rare vocalization
Not growing well
     needs to eat more
     needs to sleep more
     lots of allergicky responses to food intro.
     social, chatty, muggy, laughing
     all physical observations fine except rough skin and bloated (yet soft) abdomen

Rx: Cyproheptadine: increase appetite, increase sleep, decrease allergic reactions in the gut


So, Russell is now on Cyproheptadine twice a day.  Caleb has been on it two separate times now, once as an appetite stimulant and once in a (failed) effort to control nausea and vomiting.  But those are just side effects--the drug was originally used as an antihistamine.  It is no longer used for that very much because increased appetite is a common side effect (and most people don't like that, but for my boys--YES!).  And nowadays antihistamines are targeted to effect more specific parts of the body--like the sinuses, etc.  But this one is just a general antihistamine, so it will effect his gut.  So, if Russell doesn't have an eosinophilic disorder, and he's just reacting in a general allergic way, then this medicine may very well help him.  But eosinophilic reactions aren't like regular food allergies, because your body doesn't react with histamines.  It reacts with eosinophils, which are a white blood cell.  In that way, people with eosinophilic disorders don't have "food allergies" at all.  They have food "reactions"....

Anyway.  Since being on the medication, Russell has tried two new foods: bananas and beef.  I'm thinking about giving him strawberries or corn tonight to see what happens.  So far, he hasn't had any sorts of reactions to anything since being on the medicine, but it's hard to say if he would have had reactions anyway. I'm supposed to call the doc with a report next week.

And then, shortly after leaving the doctor's office, I noticed that Russell felt warm.  When we got home I took his temperature and he had a fever of 102*!  Poor kid was getting sick.  And for three days he slept straight through the night, when before he would wake up 2-3 times each night.  A little silver lining to his poor, sick, lethargic self.

By the next morning he was so congested, unable to eat, and lethargic and his fever was up to 103.2* even with tylenol, so I took him to the pediatrician.  Other than losing an entire POUND!, everything checked out fine and they sent me home with a mental list of things to watch out for.  After his nap his breathing was so labored and he had even less energy that I was worried about his oxygen levels, so I took him back to the pediatrician for a second time that day!  They gave me the same schpeal, and sent us home.  Thankfully he kept breathing throughout the night and the next day he was a little better.  Whew!  He has now gained back pretty much everything that he lost, thank goodness!  And he is only waking up once in the night, which I can live with.  :)

Part II of the crazy week, Caleb's Medical Status, is to follow.

Friday, August 17, 2012

The newest things

Remember this?  (The last video on the post.)  Well, he's at it again.  Check it out:

He has worn his "shoes" more often than not throughout the day.  And he has to switch between his "dancing shoes" and his "walking shoes" every 60 seconds or so.  Goofy boy!  I'm inclined to hide those rings after Caleb goes to bed tonight.  And he started repeatedly chomping his teeth together today, too.  (Sensory seeking much?)  It makes me cringe every time.

And in other news, this is what I keep finding when I turn around:

Annnnd...he's at it again.  I'd better go so I can catch my "baby" when he falls on his face.

My crazy kids.  Always entertaining!

Thursday, August 16, 2012


Last week, on the 10th, both of my children were evaluated by specialists.  Yes, because apparently we just can't get enough of doctors and therapists in our family.  You may not be that interested in this extremely, horrendously, long-winded post, but I'm recording it here because, believe it or not, all of this medical stuff comes in handy when things come up down the road.

I'll start with Russell:

Because he doesn't vocalize much, I asked his pediatrician if he thinks it would be worth it to have his hearing tested.  He said yes, and referred us to Kids on the Move, the Early Intervention program in our county (through which Caleb receives feeding therapy).  Even though all we needed was a simple hearing test done by a nurse, they suggested having a full evaluation done in case Russell qualified for therapy in any area.  Because he is Failure to Thrive, they would automatically pick him up for therapy if there was any question that he needed it.  So our Family Advocate came and did an in-depth evaluation of all of Russell's milestones.  It turns out he has a mild to moderate delay in social/emotional development (because of his lack of responsiveness related to his poor vocalization skills).  So he will be starting therapy with a cognitive development specialist shortly.  I don't know yet how often he'll be getting therapy, but their thinking is that if he ends up needing speech therapy three months from now, when Caleb turns three and graduates from Early Intervention services, then they will keep Caleb's feeding therapist as Russell's speech therapist (she's actually a speech therapist who specializes in feeding) because she has been coming to our house since Caleb was three months old.  Then she will be available to answer any questions and help with any problems that we have with Caleb's eating (off the record, of course).

Fast forward to today...Russell had his hearing test.  And, not surprisingly, his hearing is normal.  He has been experimenting with saying, "ba" here and there, but that's a very new thing, and he seems to have a hard time catching on to it.  After paying closer attention, he doesn't seem to make multiple vowel sounds, either.  It's all "ah," and no "oh" or "ee" or "ay."  Since his decrease and then increase in cooing correlate with his very poor growth and then beginning solids (and thus reasonable growth), it's possible that poor nutrition plays a part in his development.  Which is kind of scary.  I'd hate to think I starved my baby enough to cause cognitive problems just by breastfeeding him.  I thought I was being a good mom by doing that.  Hmm.

Good thing the appointment with the GI doctor is next week.

Now for Caleb:

He was seen at the NICU follow-up clinic, where the state funds a clinic with volunteer doctors, therapists, and specialists who come together to evaluate the smallest and earliest of preemies in one place.  We were there for over three hours and saw a developmental pediatrician, a nurse practitioner, an occupational therapist, a speech therapist, and a nutritionist.

The developmental pediatrician said that Caleb is doing very well.  She did things like put a block on the bowl of a spoon and hit the handle of the spoon to make the block fly, and then asked Caleb to do the same.  It was fun to see his thought processes at work!  No concerns with his development whatsoever, as always.  I asked about ADHD, since Caleb's IFSP (eval through Early Intervention) showed some concerns with his energy level and ability to focus.  She just suggested that we enroll him in an experiential based preschool where he can learn appropriate behavior for school without being expected to sit still and be quiet while the rest of the class does something that he finds to be very boring.  She said that he will have to learn coping skills when the time comes, such as squeezing a stress ball at his desk.  She also said...get this...that Caleb is very fortunate to be so cute, because it will make it hard for his teachers to hate him.  And she wasn't kidding!  She didn't say it to flatter me!  And to be honest, it really makes me sad for all of those kids who are just like Caleb who may drive their teachers nuts and who aren't cute enough to bat their mile-long eyelashes to melt their teachers' hearts.  It just isn't fair.

Then occupational therapist was very helpful.  He knew of my concerns about ADHD and the fact that Caleb's IFSP showed that he isn't making very much progress with gross or fine motor skills and may qualify for PT through the school district when he turns three.  The OT told me immediately that he could tell just by watching Caleb walk that he is a sensory seeker.  He craves sensory input (the world around him is just too boring, so his brain tells his body to do things to excite his senses) so he walks on his toes off and on.  He told me how your body is designed to absorb the shock of walking, but Caleb's brain wants to feel the shock more, so he walks on his toes so he can sort of bounce.  He does it a lot, but not all of the time, and both the OT and the nurse practitioner were surprised that his leg muscles and tendons weren't tight, because he walked like that the whole time that he was there.  He also kicks his feet nonstop if he is expected to sit still.  After talking for a few minutes about Caleb and his habits, the OT learned that Caleb loves books and will sit still and read book after book after book with us.  Because of that, the OT said that Caleb is very unlikely to have ADHD and that his behaviors are without a doubt because of the way his brain processes sensory input.  To cope with that, we are to give Caleb as much sensory input as he desires, in a way that is appropriate, so he doesn't seek sensory input in inappropriate ways.  We are to massage his legs when he is expected to sit still on our laps so he doesn't feel the need to jump down and find things to get into.  We are to get him a unitard to wear at church under his clothes so he can feel like he is getting a constant tight hug so he doesn't feel the need to run up and down the aisles, getting into everyone's purses.  We are supposed to do lots of roughhousing at home so he doesn't feel the need to throw things and get into things and have tantrums because his brain is bored.  Maybe some day we'll be able to take down the baby gate between the living room and the rest of the house.  :)  I also want to get him a weighted blanket so his brain will be able to relax during nap time.  Maybe then he won't take two hours to fall asleep at night, and maybe he will sleep during his nap time instead of singing "Paradise" by Coldplay for three hours straight!  (But hey, at least he's happy to sing in his crib for three hours every afternoon.  Because he sure isn't happy if he misses that time to calm down in his crib every day, whether he sleeps or not.)

The OT also expressed some slight concern over Caleb's muscle strength.  I could tell he was contemplating cerebral palsy (after all, Caleb did have moderate brain bleeds at birth), but after doing an exercise where Caleb lays down on the floor and then hops up as fast as he can and picks up a ball and throws it, he decided that Caleb is just plain weak.  It's probably related to poor nutrition, he said.  And it's true.  Caleb is now down to weighing 22lbs 8.5oz.  He is losing weight fast.

He also informed me that although Caleb will be too old for early intervention after he turns three, and thus no more feeding therapy through them, there is a Pediatric Rehab in the county where we can continue to receive feeding therapy!  Yay!  I thought we'd be on our own in three months' time, which is kind of a scary thought.  The negative side is that we would have to go to their facility instead of them coming to our home.  But the positive side is that our insurance would cover it!

He also said that there are no red flags as far as Caleb's motor skills.  He may not be the most athletic, coordinated toddler around, but there is nothing really to be concerned about.  I agreed with the OT, and said that my only concerns are that he is barely able to pull his pants up and down, and that combined with his extremely short attention span will really complicate potty training.  But it's alright for now, because he isn't even close to being ready to start potty training.  In fact, just the other day he peed when Nate took off his diaper.  Sooo not ready.  The OT said that that's because he is a sensory seeker!  Ah-ha!  That sensory seekers crave such deep sensory input that it makes them much harder to potty train.  He said that sensory seekers will think, "Oh!  I need to go potty!"  And then half a second later, "Oh, wait...I just went potty...."  So Caleb may not be potty trained until he's much older, and that's ok.  The only problem with that is that most preschools won't take kids who aren't potty trained, so he may not be able to go to preschool for a while.  Oh, well.  Maybe I'll put him in gymnastics.

And on to the speech therapist.  She remembered Caleb from a year ago when she evaluated him.  He was very advanced at that point, so she decided to start his eval this time far ahead of normal.  She had a big book full of pictures.  For example, a picture with a boy with a basket full of eggs, a girl with a basket with three eggs, and another boy with a basket with one egg.  She would ask him, "Which basket has one egg?"  And he would have to point at the correct basket.  There were all sorts of pictures like that.  (Unfortunately, over half of them were food-oriented.  Hmph.)  Some questions I knew were beyond Caleb's ability to answer, but some of them he got right, and a lot of them he got wrong but I would have expected him to get them right.  Then the speech therapist pointed to the bottom of the page, where it said, "5.0-5.5" and she said, "Do you see who these questions are for?"  Yes, he was answering questions for five-year-olds!  WHOA!  So it wasn't a big deal that he was getting them wrong.  Not at all.  By the end of the extensive evaluation, she said that his expressive communication was at the level of a 3.5-year-old, and his receptive communication was somewhere between 3 years and 3.5 years.  Pretty decent, I'd say!

Finally, the nutritionist.  She was sooo helpful.  We recently switched Caleb to what's called the "blenderized diet" (BD) because all four of the amino acid based formulas out there cause uncontrollable vomiting and horrible nausea.  He was losing weight and so miserable, we just had to change something.  So we're trying the last thing in my bag of tricks.  Every night, after Caleb goes to bed, I blend up his food for the next day in our awesome Blendtec blender so it's fine enough to go through his tube without clogging it.  I did my homework and came up with three "recipes" to rotate through.  Each one has enough calories, fat, carbs, protein, and calcium and we have started giving him a mulitvitamin. The nice thing about BD is that we can make it more calorie dense (aka, formula was 30 calories per ounce maximum, and I'm making Caleb's blends up to 37 calories per ounce).  I'm able to give Caleb 300-700 more calories each day through BD than before.  So I just wanted the nutritionist to look at my "recipes" and let me know if there is anything that I'm overlooking.  She said it looked great, but that she would take a copy and run it through her computer program to make sure everything was accounted for.  Also, I asked her what foods to trial next that would fill in the nutritional gaps, so to speak, and she suggested fortified baby rice cereal, spinach or kale or beef (for iron), and blueberries (for antioxidants).  She thought our course of action was a good one, and said, "I'll be interested to see how his weight gain goes."  I think we were all excited to see him finally tipping the scales, but surprisingly a few days ago we discovered that his weight is doing worse than ever.  He has lost 8.5oz in the last 14 days, despite all of the time and effort and math that I have put into getting calories into him.  His health is quite a mess and now I'm waiting for the GI doctor to call me and tell me what comes next, because at his age it is so important for him to grow...not shrink.  What a miserable disease we're dealing with here.

And that is everything.  All together, a very good appointment for Cal.  His health is a huge mess, but his development is great!  Too bad growing is slightly more important than talking.  *sigh*  But as always, I couldn't be more thankful that we don't have anything else to worry about when we have this huge feeding mess hanging over our heads.  I just hope that Russell's development catches up without a hitch.  Until then, I think I myself might need therapy in order to deal with all of this!  Or at least more dates with my cute hubby.  :)

And now, I'll finish off this heavy post with a light picture of my adorable little baby from back in May when he fell asleep with his foot in his hand: