Tuesday, March 29, 2016

Kid Quotes Again!

Caleb, asking for my help catching Zach before he got to the stairs: "MOM!  We need you!  You save all the days!"

Caleb, while trying unsuccessfully to open the child-proof cap on the gummy vitamins:  "How does it know I'm a CHILD?"

Caleb's favorite movie is Milo and Otis.  It used to be on netflix, but they discontinued it some time ago.  We checked it out from the library, and Caleb was sad when we had to return it.  He asked Nate, "Can you invent it to come back onto Netflix?  At work?  On Monday?"  (Sorry, Cal, I know Daddy can do lots of cool things on the computer, but Daddy doesn't work for Netflix!)

Russell, out of thin air, "Mom, if you see a poptart on the road, you should crash into it."

Caleb:  What would be crazy is if I had the stickiest feet in the world, as sticky as the stickiest gummy bears, and the stickiest ice cream, and I could climb on the ceiling.

Caleb:  Mom, does it take longer for you to grow up if you were a preemie?  [Yes, Caleb, it does!  What a clever little thinker!]

Caleb:  Dogs only have first names.
Me:  Dolly's last name is Purser, because she's in our family.
Caleb:  But what about a middle name?
Me:  We can give her one!  How about Face?  Dolly Face Purser.
Caleb:  Haha!  But she needs to be named after someone.
Me:  We could name her after you!
Caleb:  Dolly Caleb Purser.  But that won't work because it says 'Caleb Purser,' and that's ME!
Me:  Dolly Cal Purser.
Caleb:  YEAH!

Russell:  I think the moon is happy because the moon is smiling!

Russell, in a condescending tone:  Mom, Skye [a girl in his preschool] says "roof" when she's being a cat.

Caleb:  My mouth is getting sore from talking!

Caleb:  I have an anger and sadness core memory.  Russell and I were fighting over hotwheels in the front room.  But when I get baptized, that won't be a core memory anymore, because when I come out of the water I will only have happiness memories!

Russell:  Mom, sea turtles lay their eggs on the beach so when the baby sea turtles hatch they don't even know which sea turtle is their mom.  Isn't that sad??

We were talking about what it would be like to live in Narnia, where animals can talk, and I told Caleb that I always wondered what Hank would have to say, and Caleb said, "Dolly might have a very beautiful voice!"

Paroneal Tendon Repair

Well, after a year and a half of living with a swollen, painful right ankle, my podiatrist finally figured out what was going on!  My paroneal tendon (the one that goes behind your ankle) was slipping out of place, causing it to tear lengthwise.  There was no injury that caused this to occur; it just started happening one day!  After a few months in a boot, the swelling decreased drastically, which allowed the tendon to slip out of place even easier!  So surgery was the only answer.

When the doctor got in there and took a look at my tendon, he was surprised just how long the tear was.  It was a beast!  He was surprised that I wasn't in more pain than I was.  He said it was like a hose sliced down the side and laid open like a hot dog bun.  So he stitched that up.  He also made the groove in my bone deeper where the tendon sits.  While he was at it, he noticed two separate spots where I had an extra (and unnecessary) muscle attached to my tendon, called a "muscle belly," and they were helping to pull my tendon out of place.  So he detached and cauterized those.  All in all the incision was about 5 inches long!  He said it was a mess in there, but he's happy with how it all turned out.  I hate hearing that things were worse than expected, but it is nice to have a confirmation that surgery really was the best choice.

The day of surgery 

One week post-op.  He was quite alarmed at the degree of swelling I had!

Normal, skinny toes vs. sausage toes.

Two weeks post-op.  Swelling was improved, but a bit of the incision looked like it might have opened up...most likely as a result of me trying to carry the baby while hopping on one foot.  I lost my balance and had to use my bad foot to catch myself.  That was my first time attempting to handle the baby's nap on my own, and I have since realized that I can't do it without help!  Thankfully I've had a lot of people offer to help, and I've humbled myself enough to accept their offers!

I'm now almost three weeks post-op and I had my stitches removed today.  In two weeks I'll go in for an ultrasound to see how well things are healing.  If everything looks good, I'll be able to start putting weight on my foot, walking with a boot!  Wouldn't that be exciting!

The pain was well-controlled for the first week, but after that it seemed like meds weren't making a difference.  There are times when the pain is pretty bad, but for the most part I can ignore it.  I've been told to expect that it will take a full six months before I feel completely healed, but it'll be worth it to not be in pain forevermore!  There's a super good chance that my ankles are symmetrical, so I just have to hope that the same thing doesn't ever happen to my left ankle!

Zachary is 9 months old!

My littlest mister is 9 months old.  That's so close to one year.  So close.

Here is what Zacher is like at 9 months old:

  • He weighs 18 lbs 7 oz, which is in the 25th percentile.  His growth curve is so beautiful that I literally asked for a printout of it so I could look at it over and over.  I joke about framing it and putting it on the wall...I'll let you decide if I'm actually joking.  ;)  For a mother of two sons with Failure to Thrive, you must understand how exciting it is for me to see such a perfect growth curve!
  • He measures 28.25 inches, which is in the 32nd percentile.
  • He has a giant head in the 79th percentile.

  • He started out his 9th month wearing 3-6 month clothes, but shortly after that graduated to 6-9 month clothes, which happen to fit him splendidly.
  • He wears size 3 diapers.
  • He has six teeth (four on top and two on bottom) and doesn't seem to be too close to getting more any time soon.
  • He weaned from nursing when he was 8 months old, which was an easier transition for him than it was for his sentimental mommy.  :(
  • He mimics sounds (grunts, coughs, and vowels).
  • He has started to cruise around furniture.
  • He has started to use his pincer grasp.
  • He sometimes waves "hello."
  • He has figured out how to open cupboard doors, unfortunately!
  • He plays peek-a-boo.
  • He's pretty mild-mannered, other than the fact that he loves getting into mischief!

(Due to my slackerness, this blog post was published a month after Zach turned 9 months, and boy has he changed in the past month!  Nevertheless, I have recorded milestones as they were at 9 months old.)

Here are some pictures of Zachary from the past three months, starting with the most recent.

Saturday, February 13, 2016

Feeding Tube Awareness Week 2016

Happy Feeding Tube Awareness Week!

Let's jump right to the point of my blog post this year.

"A child won't starve himself."


You hear it everywhere.  In moms groups.  In parenting magazines.  In viral internet articles.  From your own mother.  And, as I can attest, from your own pediatrician.

I'm telling you, they're wrong!

What they SHOULD be saying is "A healthy child won't starve himself."  Unhealthy children do it more often than you would think, and in those cases, thank heaven for feeding tubes!

I'm not here to tell you what to do about your 75th percentile child who seems to live off of milk and quesadillas.  Sure, I have a lot of tips for picky eaters, but let's save that for another day.  The majority of those picky eaters will be fine.
Today let's talk about the many reasons why a child will legitimately starve, to the point of weight loss, or at least no (or very, very, dangerously slow) weight gain.

  • First, the one that encompasses many, many reasons:  it's less painful to starve than it is to eat.  Let that sink in a little.  My baby would have rather died a slow and painful death than eat.  Eating just hurt too much.  There are many reasons why eating can hurt, and for Caleb and Russell it was because they were reacting to foods that caused tummy aches, nausea, bloating, etc.
  • Then there's the cognitive cause.  Some babies are born unable to swallow, chew, etc. due to anomalies in the brain, such as cerebral palsy.  Some brains literally don't tell the body that it needs food.  
  • Then there's the anatomical cause.  There may be strictures in the esophagus, making it hard to get food down.  A tongue-tie, making it hard to swallow.  An uncoordinated swallow, causing aspiration.  A loose hiatal sphincter, causing painful acid reflux.  A congenital heart defect, causing early fatigue while eating.
  • Then there's the mental side of it all.  Things like tongue ties and reflux and an uncoordinated swallow and intense sensory processing problems can cause oral aversions so severe that children will starve themselves.  Most parents know how hard it can be to get their kid to take medicine, but imagine your kid having so much anxiety over putting medicine in their mouths that they actually throw up at the thought of it.  Now imagine that happening with water, or your baby's bottle, or food that looks or feels a certain way.  It can be pretty intense.
  • Then there's the hundreds of other medical reasons, many of which go undiagnosed for many kids.  I know a kid with kidney disease who requires a huge amount of fluids to keep his kidney happy, and the only way to get the fluid in him was through a feeding tube.  Some kids have such extreme hypoglycemia that they can't go all night without food, so they get a tube for that.  There are so many reasons!  The biggest factor in Caleb needing a feeding tube was his poor GI motility.  His body just doesn't digest food fast enough, so he always has food in his stomach, making him always feel full, even when he's only had one snack all day.  His body was literally starving to death, but he absolutely would not eat because he couldn't fit anything else in his tummy.  When he got a feeding tube, he would throw up half of what we fed him, because he was always full of formula.  Now that we found the medication that works for him, throwing up is a thing of the past.  But he still can't eat enough on his own to grow.  We don't know why, but we do know that his feeding tube still keeps him alive.  And there are so many kids in the same boat as him.

Well, there are just a few reasons off of the top of my head that explain why some people need feeding tubes.  I'm sure there are plenty more.  But rest assured, if a child has a feeding tube, the parents have tried everything imaginable to get them to grow (yes, even putting butter on everything, or serving ice cream at every meal).  Doctors don't go handing out tubes to every kid who doesn't eat his veggies.  So instead of questioning the parents' diligence, or knowledge, or parenting skills, think again about the many underlying reasons why a kid really will starve himself.  Then give those parents a pat on the back.  Coming to the decision to tube feed your child isn't an easy thing to do, but at times it is necessary, and then it's an answer to those parents' prayers.  

If you'd like to learn more, you can visit http://www.feedingtubeawareness.org/
To see a video of how we gravity feed Caleb through his feeding tube, go here.
For pictures of many of the feeding tubes Caleb has had, go here.

Monday, February 8, 2016

Soy Trial

After about a 6-month soy trial, Caleb starting to complain of daily stomach aches.  After troubleshooting ("are you hungry" "do you need to poop?"), he would still feel a little pain, so it was time to scope!

Since eosinophilic reactions occur in response to food proteins, and oils and sugars don't have proteins in them because they're so highly refined, Caleb has always been able to have soy oil and soy lecithin.  (Some very sensitive people can't have them, but we discovered that Caleb can.)  So the only things that he eats that have soy proteins in them are a few brands of granola bars (his favorite snack), soy sauce used in Asian food (which we use a lot), and a few odd things here and there.

The biopsy results are in and Caleb IS NOT reacting to soy!  So that's GREAT!  But the pathology report also showed some odd things ("fragments of antral and fundic mucosa with focal foveolar hyperplasia and elongated pits" in his stomach, and " mild basal cell hyperplasia, mild papillary elongation, and mild spongiosis" in his esophagus...don't ask me what any of those words mean!).  So even though the biopsies didn't show yeast, we're going to treat him for a yeast overgrowth, just for good measure, since he's been on daily antibiotics for 3 years.

If that doesn't take care of things, we may have to consider whether or not Caleb has a good, old-fashioned intolerance to soy, and think about removing it from his diet.  I'm hoping it doesn't come to that, but his comfort is a high priority!

It's a little crazy to think that Caleb's diet now is how it likely will be for the rest of his life!  That is:
*eosinophilic reactions to dairy
*eosinophilic reactions to eggs, but without symptoms...he has now passed two scopes while eating limited amounts of eggs
*behavioral reactions to wheat...we had to stop the trial before being able to scope, because his behavior was effected so negatively.  Maybe some day, when he's more mature, he can trial wheat again.

It's amazing how far he's come from the days when we could count his total safe foods on two hands!

There's a new restaurant in town called Chi-Ku and everything on the menu is Caleb-safe!  It's kind of emotional seeing Caleb choose whatever he wants, and then actually eat it.  It never gets old watching him stuff his face!

Thursday, December 24, 2015

Russell is 4!

Happy 4th birthday to Russell Sprout!

Four just seems so old, doesn't it?

Here is what Russell is like these days:

  • He weighs 28 lbs 1 oz, which is around the 10th percentile.
  • He measures 38.5 inches, which is also around the 10th percentile.
  • He wears 2T clothes.
  • He's obsessed, I repeat, obsessed, with animals.  Pygmy hippos, regular hippos, and rhinos are his favorites, but there isn't an animal that he doesn't like.  Sometimes he says he doesn't like "bad" animals (aka, predators), but most of the time he's still a fan.  
  • Loves to tell jokes.  His most common joke goes like this: Why did the chicken cross the road?  To make friends!
  • His favorite lunch is hot dogs and steamed carrots.  The only food he doesn't like is avocados.  He's a very adventurous eater and even enjoys spicy foods.  If his picky side ever surfaces and he starts refusing foods (it only happens when he's in a bad mood), we just remind him of our family rule:  We will put the food on your plate, but you don't have to eat it.  He always ends up eating it anyway!  He just needs to have a little control, that's all.
  • His favorite snacks are fruit leather and a piece of bread.
  • He can zip his own zipper, but has recently convinced himself that he can't.  Same goes for doing up his own car seat buckles.  
  • He wakes up early (ugh) and makes his own pop tart for breakfast (nice).
  • His hair is wavy and pretty thin.  I think he likes being the blond one in the family!
  • He is very thoughtful and is great at sharing with Caleb.  
  • He adores his baby brother and knows just how to talk to a baby.  He always makes Zach smile when he interacts with him in any way!
  • He is very, very...shall we say "strong-willed."  Ok, ok, he's stubborn.  Sometimes he'll have a fit over something small, like when we ask him to clear his plate, and it'll escalate to needing to scream it out in his room for 20 minutes.  But what he doesn't know is that his mom will always be more stubborn than him.  I learned a long time ago that one key to parenting is to be more stubborn than the child.  ;)  He's not going to get away with anything on my watch!
  • The most common source of distress (read: tantrums) for Russell is when we request that he change out of his pajamas.  He strongly prefers to wear pajamas all day, and refuses to wear clothes that aren't "comfortable."  I'm not sure if I should pack up all of his pajamas and make him sleep in regular clothes, or just choose not to fight this battle and let him wear pajamas all day every day and hope that this is just a phase.  I do let him wear pajamas most of the time as long as we're not leaving the house...after all, I would do the same thing every day, if I could.  ;)
  • At times, when he's having a tantrum, I've been able to say to him, "Russell, do you think you'll get what you want if you cry?"  And he realizes that crying won't work on me, and he stops.  Clever little manipulator.
  • He is also very clever in other ways.  He makes the most witty jokes, and notices the most obscure details.  I love that about him.
  • The dentist has been telling us that Russell has a small mouth and his teeth are close together and that he needs to floss better than other kids his age (which isn't a problem, Russ loves flossing) and that he'll need braces.  Yes, we knew when our kid was three that he'll need braces.  Real fun.
  • He has told me many times that he doesn't like being called Russ or Russell Sprout.  Only RUSSELL and SPROUT.  I still call him Russ all of the time, and he never corrects me, but if you have that conversation with him, he'll tell you he prefers Russell.
  • He gets a lot of compliments from strangers on his eyelashes.  Somehow all of my boys have lovely eyelashes.
  • He is very attached to Baby Bear, his small stuffed black bear.  He sleeps with him and brings him places when he's nervous (like to Church) and even uses him to wipe his tears.  Literally.

Russell, I'm glad that you're making up for your difficult infancy by being a wonderful preschooler.  You are full of whit beyond your years, you have an amazing brain for storing animal facts, and you are one of the most caring, giving, and gentle little kids I've ever met.  Russell, never change your gentle ways or your goofy personality.  We love you exactly how you are!

And now for an interview with Russell: