Saturday, December 8, 2012

a boy and his toys

He's totally all boy.  Couldn't wait to have his turn with his Uncle's new nerf gun.  Never mind that he can't pull the trigger, he just needed to try it himself!

This right here is Martin's Superhero (the green lantern, but he's just called Superhero around here).  I caught him singing him a bedtime song, covering him with a blanket, giving him kisses, and saying "I love you".  He kept doing it all day, and I loved it.

I caught him the other day with this little magna-doodle (which the kids usually fight over).  He found a wonderfully comfortable spot on my wheat bucket in the kitchen and just settled himself in there to color.  The kid loves to color!  It's such a difference from his older sister, who doesn't really care about coloring.  quick scribble and she's done.  But Martin, will color for a while.  And he doesn't like to be given pictures to color, he turns the paper over and colors his own picture.

And on the feeding front....

It's been about 2 months since we've used the tube.  And he's gaining weight.  This is HUGE.  This means we will soon be done with the tube.  We're going to wait and see how winter treats us, and how he gets if he gets sick this winter.  If the tube needs to be used or not.  That will be the deal breaker, but until then...We're pretty much tube free!!!

Monday, November 5, 2012

This boy

Can I tell you something about this boy?  We're weaning him off his feeding tube.

I haven't dared say anything, but in about the past 3 weeks, he's only been tube fed a handful of times.  Martin has a tendency to realize someone said something about him, and then do the exact opposite, as if to prove that he's the one in charge and he will not follow anyone's standards set for him.

It made the NICU journey that much harder.

If you're a praying person, could you say a prayer for us?  Or send positive thought vibes our way that his weight is maintained at his weight-check tomorrow? And that his appetite will increase and he'll try more foods?  This is really the last big hurdle for this boy right now, and it scares his mama!!

Sunday, September 30, 2012



Yes, that needed all caps. 

Martin has been willingly eating watermelon.  Not a lot, but this is SUCH a huge texture step for him.  This is a normally 'unsafe' food for him.  It's wet, and soft.  Two things that he will normally not touch, and freaks out a bit when I make him touch them.

And yet he grabbed a slice of watermelon and ate it up.  And was kind enough to offer a bite to Auntie Amber.

Saturday, July 28, 2012

He's definitively two

These are only the tantrums I took pictures of.  There were more.  But I didn't think every single tantrum needed a photo.  They're basically all the same. 

 Collapse on the floor.

Make sure I'm getting some acknowledgement.

Collapse again.  Very dramatically.

Smile coyly at mom.

At least his tantrums don't involved screaming.  {{knock on wood}}

Sunday, June 3, 2012


Still a process.  Still on the feeding tube for a majority of feedings.  But he has his favorites, things he'll always eat.  Pretty much anything crunchy.  Goldfish crackers, pretzels, graham crackers, club crackers, veggie straws, animal crackers.  

Sometimes he'll even be adventurous and try something new.  A fruit snack stolen from Katryn.  Cheese stick stolen from Katryn.  Well, almost anything that used to be Katryn's.  Still not very often though.  

Loves his water bottle.  Although sometimes he's not very productive drinking from it.  Seriously buddy?  That looks easy. . .not.

He loves having snack time with Katryn and sharing with her.  He really likes to do whatever she does (and vice versa actually--she mimics him a lot) which is helping him figure out this whole eating thing.

Breakfast is usually good--tube free!  Frozen waffles are a hit (with or without syrup) and so is french toast.  We're going to try peanut butter and jelly sandwiches this week, see how those go over.  If we can get a lunch meal, we'll be down to only 1 tube feeding a day, and could easily wean him off!!

Monday, March 12, 2012

Happy Birthday!

I can't believe it's been TWO years!!  Those two years went by so fast, yet SO. SLOW. at the same time.

Happy birthday to my warrior!!  Here's to the next year, and all the new stuff you'll learn!  (like eating, let's get that taken care of eh?)

Sunday, March 11, 2012

New tricks

 This is one of this therapy toys.  I know, rough life right?  He loves it right now!  It's like his throne.  He climbs up and down all day long.

Throws his feet on both sides of it, and has even almost mastered some movement with it!

And uses it as a jungle gym.  Yeah, I'm only slightly worried about him pushing away from something, and falling and cracking his head open.  yeah. . .only slightly. . .

Friday, February 17, 2012

RSV strikes Martin

We spent Feb 4th-11th hospitalized with RSV and pneumonia.  Dang, it sucked!!  That RSV is NO JOKE people.  Be careful with your little ones.

We didn't qualify for the synagis RSV shot this year, since Martin's been off of O2 since June.  I wonder if it would have made a difference if we HAD received the shot.  However, this was our 1st real sickness this season, so we've been pretty lucky!

The first few days were pretty rough.  He had been tired and lethargic at home, and starting coughing the day before we went in.  They had him on 6L O2 in the ER.  SIX people!!!  That's a LOT of flow.  And his retractions were HORRIBLE.  Now, he always retracts when he breathes, you can see his skin kind of being sucked in through his ribs when he breathes.  That's just how he is.

Anyway, we spent a few days laying on the bed, just cuddling because Martin had NO energy.  They had him hooked up to an IV and the standard monitors, and we fed him through his tube like normal.

 After a few days, he started to get some energy back.  Just a little bit though, still didn't want to do much except for cuddle and play on dads computer. And the raging fever!  For about 4 days (at LEAST that long) he had to get Tylenol every 4 hours to drop it below 100degs.

Since RSV can be fairly contagious, every time a nurse, resp. therapist, Dr, or whoever came into the room, they were decked out in a disposable gown, mask, and gloves.  Every time Martin saw those yellow masks, he would just start crying, knowing something he wouldn't like was going to happen.  Poor kid, that dang suction machine was NOT his friend (as necessary as it was!)

The high flow helped--only 4L though.  Still more than when he was in the NICU, but really.  I thought we were done with that dang machine!  That's about when I started to get worried, because Martin is a bit of an O2 junkie. . .

Thankfully though, he hit that corner and started getting better fairly quick.  And weaning him off the O2 happened quick too!  Within 24 hours, he went from 4L high flow, to 1/2L regular flow.  It was AMAZING.  And we came home on 1/4L and had him weaned off completely in 2 days!  I couldn't believe it.

And even better, he didn't loose his desire to eat!  (what little there is!)

For now though, we're shutting him away for the season, and letting his system recover and build up a little bit more.  RSV is just hitting here, since the season has been so mild and I do NOT want to end up in the hospital again!