Holy crap!

I knew I was slacking, but man, I didn't realize it had been this long since I updated on the kiddos!  Sorry peeps.  Let's see if we can summarize.

J

He's now trying to walk.  He's up to about 8-10 steps, and he's trying to turn.  This is all on his own, as I guess he's too good for the walker now.  At least he seems to think so.  He loves to stand by David at one side of the living room and say "Walk to mama" as he toddles towards me.  He can reward himself with his own "yay" too. 

J got a bike from Santa for Christmas.  Once he warmed up to it and figured out what it was supposed to do, he realized it was pretty awesome.  "Vrooom, vrooom."  Of course he prefers if it goes backwards and enjoys ramming the refrigerator. 

He's starting to eat a bit better.  He'll even take his medicine, "meh-sin," from a spoon.  The kid asks for cookies ALL the time.  How he can still be so skinny (compared to his height) is beyond me.  He must have the metabolism of a tri-athlete.  Found out that he likes meatloaf, spaghetti, rice krispies, and jello. 

Ok, the jello thing - not so exciting as we figured that one out as he was in the hossy on Jan 1.  Four seizures in a short time frame.  We have now officially been on every floor at Children's.  But we got over it.  Then came the flu.  Or something like it.  Evil, EVIL I tell you.  Back to the hossy for IV fluids.  My poor boy.  But now, you'd never know he was so sick in January.

M
What a little chunk!  Don't ask me how the girl manages to put on weight when she still hurls all over the place.  She often lets me know that what I, or others, are wearing is simply not acceptable.  She is taking a bit of babyfood orally, but that's touch and go.  Right now, feeding her soley by mouth just isn't an option.  She will put anything and everything in her own mouth, but as soon as she sees that spoon, she goes into lock-down.

She loves being flat on the floor where she can *try* to roll over.  Not much in the way of success, but it's cute watching her try.  She gets so close, but that bottom arm (and the Buddah-belly) always get in the way.  She giggles afterwards as we praise her effort.  While she can't roll yet, she does manage to wiggle her little self into a number of positions so she can get just what she wants, be it a) in her brother's way, b) in front of the TV, or c) close enough to her play gym so she can kick the arms.

We've been lucky enough to keep her out of the hospital for the most part.  She's had a few little illnesses, but we've been able to treat them at home after a visit to the office.  She does have a few doc appointments coming up that might lead to procedures later this spring, but nothing set in stone yet.

And she's as cute as a button.

The sickies

My boy is sick.  Like throwing up, sleeping, not eating, fever - sick.  I just want to make him feel all better.  I'm not used to this, as he's generally a healthy kid.  I know with him in school now, he'll be exposed to a bunch of new germs (like the lice that were in his classroom last week - YUCK).  But I don't like it when my Buggy is sick. 

And when Buggy is sick, that just begs the question of when is M going to get it.  And you KNOW if J is running a fever of 101 and throwing up, that if M gets it, we are screwed.  She's just getting over some crud that came up after her bronch/GI.  Still on O2 at night.  But if she gets sick...I don't even want to think about it.  We almost spent last Thanksgiving in the hossy.  I don't want to do that again.

Revolving door

That's what I think this hospital stuff is.  Because as soon as we get out, we are back here soon enough.  Today was M's bronch and GI scope. 

Purpose of the bronch:  see if the dialation from May held.  See if her airway is improving.  Dialate further.  Outcome of the bronch:  airway did maintain some of the dialation from May.  In May, they couldn't get a 2.5 mm flexible scope down her airway - the same they used on her the night she was born.  Now, they got a diameter of 4.3.  More than I was expecting.  She does have a decent granuloma (random bubble of scar tissue) growing in her airway that will have to come out at some point, but it's not urgent right now.  Follow-up with Doc Q next month.  We will repeat the bronch/dialation every 3-4 months.

Purpose of the GI scope:  see if there were any glaring issues that could be causing her recurrent spitting.
Outcome of the GI scope:  Fundo is still in place and looks pretty decent.  Nothing obvious that is causing her spitting.  Will wait until we see the results from the biopsies say.  Could show inflammation that could cause spitting.  If not, we go from there.

Ok, now that all the medical crap is out of the way... Not to shabby of a day.  Today, other than the constant headache from yesterday (we'll deal with that later), was ok.  After working 1/2 day at school, off to the hossy.  M was cute and happy as ever.  I have to say it was "nice" not being so nervous.  We've gone through both of these procedures before, so not much "unknown" to deal with.  The tylenol made a mess, but now it's pretty easy to change out her g-button gauze.  And back she went.

I don't know why I was so anxious in the waiting room.  It wasn't nerves, but I was on edge.  So thankfully, we had visitors to keep me occupied.  My mom was there - of course!  (My dad would have been too, but he was at our house with J.)  My sis and niece showed up too.  With Starbucks.  Dude, that stuff is better than heroin!  Ok, not that I know that from experience, but you get me.  And Phyllis, a former NICU mom with me, came to check on us.  Her sweet boy Logan is at another hossy here in town, and she came by to see M.  Man, I didn't realize how much I missed her.  It's nice to have another mom that has gone to hell and back a few times understand the sarcasm and humor that accompanies it all.  And she brought M a purple horsey.  :)

The whole ordeal is a bit like deja vu.  In the waiting room:  Steph and Jodi from RT.  Anthony the pastor.  Doc H from ortho.  Doc O and Julianne from genetics.  Doc P from neurosurg.  Doc C from peds surg.  Crappo Doc L from neuro (we won't see him any more).  Then we get assigned to 412 which is where we were in June, and next door to where we were with my niece 2 weeks ago.  Our nurse was my niece's nurse on that visit. 

Coincidence?  I think not.  I think we are simply here way too much.  37 visits to be exact (according the pre-op nurses).

Money needs to grow on trees.

Whiny mommy.  This time, it's about money. 

When David and I decided to have kids, we knew money would be tight.  Food, diapers, wipes, doctors' appointments, etc.  What we didn't realize was that there are tons of "hidden fees." 

We didn't know that J would require special bottles that cost $9 each.  We didn't know that he would have SO many doctors' appointments (plastic surgeon, dentist, genetics, ENTs, pedi, neuro, optho, audio, PT, OT, feeding specialists....), thus the co-pays.  We didn't know that we would have to buy him special shoes - the $10 ones from Walmart just won't cut it with him.  We didn't know that insurance was going to deny his leg braces because it's "developmental."  (Don't get me started on they hypocracy of that one.  We'd be here all day.)  We didn't know J would still be in diapers as he approaches his 4th birthday.

We didn't know M would spend her first 5 months in the hossy.  We didn't know insurance would deny the claim for using nitric to save her life because it was not a proven drug (asshats - I'll show you the proof.)  We didn't know we'd be at the hospital so often with her that we'd learn the coffee-shop lady's name.  We didn't know she'd come home with so many machines.  We didn't know that said machines would use SO much energy (our electric bill has nearly tripled since she came home).  We didn't know we'd be so used to so many medications that we can spell them out for the doctors/nurses.  We didn't know transportation would become an issue, as my car cannot fit them both with all the bags they require.

We didn't know how financially taxing children could be.  We struggle from day to day.  I must thank God for medicaid, as we would really be in a world of hurt without that.  But sometimes, it's just not enough.  How do you explain to people that you need a new car?  Not just because you are tired of the one you have, but because you need the space for your children and their machinery.  How do you explain the need for a bigger house?  Not just because we are tired of this one or don't like it, but because with all of the kids' "stuff," we are literally tripping over their machines and contraptions.  Which bank is going to listen to those pleas?  Which utility is going to understand a tripling bill just isn't in our budget?  What do we cut out?  Soup for J?  Yogurt for him?  After all, those are some of the only things he'll eat.  Or do we go without a med?  How about the mortgage?

Ugh.  My kids are worth every cent, every headache, every argument, every smile.  I would do it again in the blink of an eye without hesitation.  And I don't mind going without all the fancy crap most moms my age have.  David is great about not requiring much for himself either.  But for once, it would be nice to NOT have to worry about how to pay for their necessities.

Don't go there. DON'T go there!...She went there.

And yet again, her timing is impeccable. 

M is scheduled for a bronch and GI scope next Wednesday.  All fine and dandy.  They want to see if her airway dialation from May held at all and perhaps get some sort of idea as to why she is yet again spitting like a pro-wrestler.  Her specialty move?  Regurgitating formula down your shirt from a foot away.  You become so distracted by the slightly sweet smelling, soggy mess, that the Princess has time to make her move for her favorite toy.  She hides her HME.  But I digress...

So anyway, she needs to be healthy.  Someone let the cat out of the bag.  The girl caught on to the plan.  And now, she's coming down with whatever her brother has. 

J got sick last week.  Fever of over 102.  Green crap coming out his nose.  A cough that has the neighbor's dog curious.  Lovely nurse just kinda went "oh, that's not bad for a kid his age."  David then asked about his seizures.  "What?  He has seizures?  Let me check."  Oy, remind me to only call when our regular nurses/docs are in office.  They want to see him.  Strep culture is negative.  But do you think the on-duty doc would do a flu swab?  Of course not.  That would make sense, especially considering we have a medically fragile preemie at home.  Someone needs a dork-slap.

So, J is working on getting better.  He throws in a seizure at school just to keep everyone on their toes.  And M, enthralled with her brother as always, has decided she wants to be just like him (minus the seizures, thank God.)  All last week, she had more secretions than usual.  But last night, the girl went yellow.  Not just a little.  Not for one suction episode.  Yellow. 

Shit.

School boy

So a whole month ago, my boy started school.  I was SO excited for him!  I knew that it was going to only help him.  J was going to interact with peers, learn so many new things, read books, play with new toys, work on walking, etc FOUR DAYS A WEEK.  I couldn't wait to see him progress.  I was grinning from ear to ear.

Dad, on the other hand, was terrified.  Were they going to take care of him?  What if the bus driver forgot him?  What if kids teased him?  Dad was in tears on the first day (and second).  I think he's coming around now though.

I had to take him out to select his own backpack.  I wanted the Wiggles, but I couldn't find one for him.  Huskers?  Batman?  SpongeBob?  Nope.  He wanted Spiderman.  Once he saw that one, that was it.  End of story.

August 23.  The day of reckoning.  For the kid who usually sleeps until 1030, getting up at 630 was a rude awakening.  Literally.  The boy was tired.

Daddy got him on the bus.  Please don't mind Dad's completely awful swim trunks that doubled at shorts that day.

All in all, it was a success.  J had a good time.  He's learning so many new words.  He's becoming more independent with walking.  He wants to go to school - the one day we couldn't do due to appointments, he kept looking at his backpack and asking for the "buff."  That's bus for you non-fluent types.  We keep in touch with his teachers through newsletters, a notebook, email, texting, etc.  Yeah, I'm one of "those" moms.  My boy is growing up.  And this mommy just couldn't be prouder.

Teeth!

Mmmmmm, finger-lickin' good.

So I FINALLY got the shot.  Her first tooth poked through back in April, and you'd think I could get a picture of it before now.  However, no such luck.  But now, after months of pictures, I see teeth!  She actually has 7 total now.  I know you can't see them all, but still - WE HAVE PROOF OF TEETH!