Wednesday, November 13, 2013

Caleb is 4!

Can you believe it's been four years since my little man came into the world?  That day was one of the scariest, best days of my life.

Every year on this day I think about what we've been through.  His first year was a roller coaster, no doubt, and ages 2-3 were pretty awful with lots of vomiting and more questions than answers.  I'm glad to say that we finally have a few things figured out and things are looking up!  Let's hope it only gets better from here on out!

Some things about Caleb at 4 years old:
  • He weighs 28lbs 4oz.  He has gained four pounds in the past year, which isn't much, but all of that has been gained since his DGE (delayed gastric emptying) diagnosis in January.  After being treated with augmentin (1 teaspoon 2x daily) to speed up his digestion, he immediately gained over two pounds.  That was a big deal after having no weight gain in about 8 months.  A few months ago he started plateauing again, so we started giving him 1.5 teaspoons of melted coconut oil through his tube 2-3x a day, and that helped him pack on the next few pounds.  I'm afraid that he's starting to plateau again now that it's sick season, but we plan to stay as quarantined as possible so we don't lose too much ground.
  • He wears 2T and 3T clothes.  His 2T clothes are getting short on him these days.  Yay!
  • He wears size 8 and 9 shoes.
  • He still doesn't eat much by mouth (maybe 100 calories...today it was two baby bites of a hot dog, about 8 green beans, one pea, a minuscule nibble of a piece of pineapple, a little graham cracker square with a melted chocolate chip on it, and a starburst...some days are better, some are worse).  He gets about 17 ounces of medical formula mixed with rice milk through his feeding tube pumped at about 50ml/hour while he sleeps at night, as well as 6 ounces in the mid afternoon and 6 ounces before bed (both fed via gravity feed), and hopefully a few ounces at breakfast or lunch (it's hit and miss), plus a few teaspoons of coconut oil.  He also gets four ounces of water first thing every morning, and gets his tube "flushed" with about half an ounce of water after every feeding.  It sounds like a lot, but it's really not.  That's a minimum of 29 ounces of rice milk and formula combined, plus about 5 ounces of water, and 100 calories of real food.  I wish we could give him more, but it's so hard to increase his volume without making him throw up!
  • His favorite thing to do is play outside in the sand by himself, with the dog, or with his brother.  

  • If you ask him, he'll say his best friend is Russell.

His next best friend is Nash, but judging by these pictures he's actually a bigger fan of Nash.  ;)

  • He is finally forward-facing in his car seat.  When we got our mini van in June/July, we asked him if he wanted to face forward or backward, and he chose backward.  So backward he stayed!  Until he noticed that a few of his friends were facing forward.  When he mentioned it to me, I asked him if he wanted to face forward, too, and he said yes.  Since the switch, it's so much easier getting him in and out of his car seat!  I can even buckle and unbuckle him from the driver's seat.  It's pretty awesome.  Although, we have yet to reveal to him the pleasures of having a DVD player in the mini van.  I'm hoping to keep that one a secret for now.  ;)
  • He sleeps in his own big-boy bed!  He stayed in his crib well past his 3.5-year mark without ever climbing out of it.  It was working really well for him, until a few months ago when he started waking up in the night asking to use the potty.  We wanted to capitalize on the opportunity to have him nighttime potty trained since he gets a lot of fluids through his feeding pump while he slumbers, so we decided it was time to put him in a toddler bed to make the potty easier to access.  We put a little hook on the wall by his bed to hang his backpack with his feeding pump so he could just grab it and go to the potty.  For a while he was asking help to go potty many nights out of the week, but it's been a while now since he's gone.  Oh, well.  Some day.
  • Nap times are a thing of the past.  Whoever said that "a child will sleep when they're tired" has clearly never known a child like Caleb.  He doesn't get drowsy when he's tired, he gets more wild than usual, and he's usually pretty wild.  You don't want to see him when he's tired!
  • He does a great job of staying in his bed at night time.  I'm sure it's mainly because he is tethered to his feeding pump, but he has never once gotten out of bed to join us in our room in the night.  Sometimes he will come down the stairs shortly after being tucked in, but not often.  And in the morning, he almost always stays in bed until I come to get him up.  It's ideal.

Except for a few times, when he has left his bed after being tucked in and waits for us on the stairs, where he eventually falls asleep, pump backpack and all!

  • He is allowed to eat anything but the top 8 allergens, is known to have eosniophilic reactions to dairy, soy, and wheat (debatable, but for now we're considering wheat a "fail") and still has to trial the other top allergens, and goes wild if he consumes red food dye (so it's also not allowed).  We just started an egg trial.  It sounds so complicated, but it is so much easier than where we've been!  We can actually share family dinners!
  • He can hold a conversation with anybody and everybody, is super easy to understand, and uses correct grammar (other than "I don't want no -fill in the blank-"), but still likes to regress back to Russell's style of talking (ugh), probably because Russ gets attention for talking in his little learning way.  It happens a million times a day.  Not my favorite thing.
  • He isn't one bit shy.  Not one bit.  While trick-or-treating, he said to one person, "So, how is your day going?"  He also likes to tell strangers, "My name is Caleb.  My dad is Nate and my mom is Anna.  My brother is Russell, and the girl in our house is Auntie Jenna."  We talk often about how he shouldn't talk to strangers, and what to do if one tries to take him.  He's great at reciting "I bite and kick and scream," but I don't think he could identify a stranger if his life depended on it.  That's why I keep my eye on him every second when we leave the house!
  • He gets himself dressed on his own, so he sometimes ends up with some pretty creative outfits.
  • He tries my patience on an hourly basis.  
  • He has some pretty intense sensory needs--can't stop touching things, talking, moving, or putting things in his mouth (other than food).
  • He is a pretty sweet big brother.  I'm fairly certain that he doesn't see Russ as inferior to him because he's two years younger.  They talk and play so well together (a lot of the time--not always).  
  • He is suddenly very scared of things.  If there's an intense scene of a movie, he runs to the playroom doorway and pokes his head around the corner to watch.  He has seen a few movies in theaters and always does awesome while there, but when he had the chance to see Despicable Me 2 for a second time, he absolutely would not go because he was scared of the purple monsters.  
  • He has an amazing memory.  He not only talks about the Christmas tree that he had in his room last December, but he talks about how we sing one song and open one present every night in December, and how the presents are wrapped in paper that he finger painted.  Sometimes I don't even know what he's talking about because I don't remember as much as he does!
And now, here is an interview with Caleb on the day after he turned 4:

And a few "then and now" pictures (no smiles...I'm just happy to have a few that weren't completely blurry):

Isn't he amazing?  He sure has come a long way and beaten a lot of odds!  We love our little miracle!

1 comment:

Coffee Mama said...

He sure is amazing! Its been so great to watch him grow and he is doing so well. Makes me smile :)