6 months

I can't believe it's been six months.  The first six months of the rest of my awful life.  I hate my life now.  Don't lecture me about that; your words really wouldn't matter.  I've learned a few things along the way, so here's some advice.

1) NEVER compare losing a child to losing ANYONE else.  While you may be able to empathize to some extent, you'll never get it.  And I pray you never do.

2) Talk about him.  Don't be afraid to mention his name.  Share pictures and stories.

3) Yes, I still cry at the drop of a hat.  And no, there's nothing you can do about it.  Just give me a hug and hand me some kleenex.

4) Little shoulders can manage a lot.  M doesn't seem to mind that the weight of my being is on her shoulders.  In fact, she's pretty much mastered the "make mommy smile" move.

5) The little things still mean the world.  Donating $10 to the Epilepsy Walk we are doing touches me in a way I can't express.  And for those of you who are local and have joined our team, you are now family.  I truly love you.

6) Don't expect an "I'm fine" to the how-are-you question ever again.  I'll never be fine.  And if you're going to ask, I just might tell you the truth.  But if I do say "I'm fine," that's a pretty good hint that I don't want to deal with it today.

7) If you think of something you'd like to do to remember him, please do.  Yes, I'll probably cry.  But sending me a wall collage of all of the important men in your life, including J, is amazing.  You don't need to ask, but please share with me.

8) I'm still trying to find my new normal.  I have a feeling it's going to be a life-long search.  But some things haven't changed.  I still have two beautiful children who mean the world to me.  I'd die for them if I could.

9) I'm sure there's more, but I can't see through the tears anymore.

Time Hop

Time Hop on Facebook is a double edged sword.  Not how I needed to start this week.

I love seeing all the old posts, especially pictures of my kids.  Not that long ago, a picture of M sticking her tongue out like Gene Simmons came up.  Can't help but smile at something like that.  And shortly before that, I got to watch a video of J bouncing.  God I miss that.

Today wasn't as nice.  Showed a post from seven years ago.  Talking about J's first seizure the day before.  That was what started this whole nightmare.  I remember it like it was yesterday, literally.  M was in the hospital; pneumonia I think.  Nurse Mandi was in her room with me when I got the call from the kids' dad.  J had collapsed and started shaking.  I immediately said he needed to call for an ambulance, which he did.  I met them downstairs in the ER.  Yup, M was on 4th floor (I think it was 4) and J was in the ER.  He was alert by the time we all got there.  All the tests came back ok, so we were hoping it was a fluke.  Little did we know...

Not fair

So a friend of mine is getting ready to say goodbye to her little girl.  They've selected Wednesday as "the day." My heart goes out to her.  I can empathize with her pain, but I can never understand exactly how she feels. 

This is just not fair.  Her daughter has fought her battle long and hard, just like my J fought his disease.  She was a micro just like my Maryn.  She has a little brother to watch over.  She won't have to suffer any more, but that doesn't help.  This just fucking sucks.  No child is supposed to go before his/her parents.  I'd like to think we'd all change this if we could, but we are so helpless.  The proverbial "life isn't fair."  There is nothing anyone can say or do to make this any easier. 

I want to be there for my friend, but it's too soon.  I suck as a friend.  I just can't.

So Jaime, please watch out for Montana on Wednesday.  I told her mom I'd have you greet her and show her around.  She likes horses, so maybe you can show her the stable.  God bless you my sweet Buggy Boy.

Tsunami

First thing - stop trying to make me feel better.  It won't work.  And honestly, you'll just piss me off and alienate me in the meantime.

This grief things sucks ass.  Yesterday and today are really bad.  My eyes are so swollen from crying so much that it looks like I fought Mike Tyson and lost.  Everybody wants to fix it.  But there's nothing anyone can do.  I just found out that we got the autopsy report back.  No, I haven't looked.  I've had a few people look at it for me and give me a little bit of info.  SUDEP.  Sudden, unexplained death from epilepsy.  And of course they don't know exactly how this happens.  So I'll never really know if I had gotten up one more time if I could have saved him.  Of course family and friends are saying that it wouldn't have changed anything, but they don't know that.  I understand they are trying to make me feel better, but it feels like it's undermining me.  Placating me.  Wishful thinking.  The proverbial rose-colored glasses when no one knows what color they should be. 

I need someone to hug me and sit there in silence.  Don't try to fix it because you can't.  Hold my hand and just let me lean on you.  Like literally.  I may not be a touchy-feely person in general, but I need the human contact now.  And I can't deal with anyone else crying and being super upset either.  That makes me feel like I have to try and comfort someone else.  And I don't have that in me right now.  Call me selfish; I don't care.  It's taking all that I have to keep myself together (which is working about as well as a pair of rusty scissors).  And stop trying to make me talk about it.  I can't process this shit, so trying to make me express what's going through my mind confuses me, frustrates me, and makes me question everything.

I'm sure this wave will ebb and flow.  For the rest of my life.  Right now it's at a pretty high peak.  And he knows it.  He's still sending me signs.  And I need it right now more than ever.

Easter approaches

So this is supposed to be the biggest holiday in the Catholic faith.  But I tell you what, I sure as hell don't feel like celebrating.  Call me selfish or whatever, I don't care.  Spring and Easter are supposed to represent new life.  Yet my son is gone.  Holidays are a time for families to gather together.  A huge piece of mine is missing.  Longer days mean more light.  Yet my world is permanently in the shadows.

I can't get any Easter basket stuff together, because it's not a holiday without him.  Hunting for Easter baskets for just his sister and not him is just not right, not okay.  I won't even be able to eat.  Ham and potatoes were some of his favorite things to eat.  I can't eat or even buy his favorite foods.

So while I'm forever thankful that God promises a life together beyond this realm, I think I'll just spend the day asleep, trying to avoid life in general.  And if you want to help, distract me with anything NOT Easter.

Signs

I've been craving to get a sign from my son that he is ok.  I've been waiting to see cardinals or butterflies.  I've been looking for random change on the floor.  Nothing.  It's been so hard not knowing.  Well, I think J realized that now.  But the signs aren't for me, they are for his sister.  J is taking care of his baby sister from the other side.  I have no doubt now.

The first two instances you might write off as a coincidence.  Two months to the day that J passed, I get a phone call from M's ENT.  He's no longer suggesting the massive, 2-3 weeks in the hospital, reconstruction surgery to get her trach out.  He wants to do a simple scope then pull the trach the same day.  We will spend 2-3 days there instead, if all goes well.  Now of course I'm terrified since we will be dealing with her airway (I'm convinced J stopped breathing during or just after a seizure).  But I trust this doc.  And I made him aware of my concerns and the situation.  I believe he wouldn't recommend this if he didn't honestly think it was the best for M.  Did he pick that day?

Stemming from that, once her trach comes out, M won't need a nurse at school.  She'll just need a para.  This is huge.  She's always had a nurse working with her with the educational stuff.  That's what I'm used to.  How's a para going to deal with all of her disabilities?  Well if the rumors are true, I have nothing to worry about.  I've heard that J's para will be M's starting next year.  I adore this woman.  The love she's shown J, the hard work she's done with him, the results she's gotten with him are all beyond my wildest expectations.  I have NO doubt Ms F will do amazing things with M.  Did J intervene?

Honestly, those two I wrote off.  But last night was a no-brainer.  J is watching out for M.

I noticed the same thing a few nights ago but thought nothing of it.  I went to put M to bed last night.  I asked her if she wanted her "necklace" on (PSI collar).  She said no and assumed her sleeping position.  I took that as a "leave me alone and let me go to sleep" hint.  So I did.  I'd take care of the rest later when she needed her meds.

8:30 rolls around.  I get her meds and her water ready and go into her room.  Her blanket is on her.  That happened early this week, but this time it jumped out at me.  I gave her her meds and put her necklace on.  I called to my mom and asked if she had put M's blanket on.  No.  I then went into see my dad.  I asked him the same question, even though I didn't remember him hobbling with his walker to her room.  No. 

At that point, I knew.  J covered M.  Always the big brother.  Always taking care of her.

April 6

Today is just a super sucky day in general.  Of course there are the "normal" things going on that stress any adult out.  But today is worse.  Not only am I trying to deal with the loss of my son, today is also the 11th angelversary of my first.  11 years ago today I lost my first to miscarriage.  I was roughly 8 weeks along.  We didn't know if the baby was a boy or a girl, so we named her Taylor (my heart says girl).  I didn't know how I was going to survive that ordeal.

Now let's compound that with the grief I feel today.  And let me tell you, while both are devastating situations, there is also a HUGE difference.  Which makes me feel worse.  I sound like an awful person when I say that my miscarriage was "easier" than losing J.  Like losing one child is worse than losing another.  It sounds like I love one more than the other.  But that's so far from the truth.

With my miscarriage, I was grieving the loss of all of the hopes and dreams.  I will always wonder what she would have looked like, what she would have liked to do, etc.  But I also had no frame of reference.  With J, I miss everything.  I know what he looks like.  I miss that.  I know he likes to bounce.  I miss that.  I never got to hold Taylor's hand, but I did with J.  I miss that.  I miss feeling the prickliness of his hair.  I miss the drool spots on my shirt.  With J, I had actual experiences, so I have actual things/events/memories that I'm missing instead of just all of the "what ifs." 

So here I am today grieving my one and only son.  And grieving my first angel.  And feeling like the most awful mom for saying there IS a difference.

Fuck you Aetna

So yesterday I get a bill from the Med Center.  $300.  From September.  For J.  Because the damn insurance company was throwing a hissy fit.  They didn't know they were primary insurance.  WTF?  How can you not know that?  Yes, J had Medicaid, but that hasn't changed in over 7 years.  So because you can't get your damn act together, I had to call about my dead son's medical claims.  I will never forgive you for this.  I'd say fuck you and the horse you rode in on, but the horse is innocent.  And have fun paying more claims for me now that you put me through this shit.

You didn't just say that.

"I understand" - no you don't
"I can imagine" - no you can't
"How are you?" - you don't really want to know
"Are you ok?" - what do you think?
"I lost my grandfather/uncle/etc." - doesn't fucking compare
"At least you had him for..." - how long is enough with YOUR kid?
"He's not hurting anymore" - should never have been in the first place
"You're so strong" - I have no choice
"I couldn't do it" - I want to die every single day
"But you still have M" - and that makes it better you fuckhead?

And so help YOU, if you come at me with "God has a plan" or anything like it, I will go off on you.  And quite possibly hurt you.  And not feel a damn bit sorry about it.


So what should you say?  I'm sorry followed by a hug.  Because no words can make it better.

Devastated

My boy is gone.  Two months ago today epilepsy stole him from me and from the world.  The world simply isn't as bright anymore.  For anyone.  I still don't know how to process this.  The only good thing I can say is that he's no longer suffering.  I may be using this platform to get my thoughts out from here on out.

HOPE

Sometimes it's odd how things come full circle. Just over six years ago, my life was hell. My baby girl was fighting for her life, and there was absolutely nothing I could do. No one understood. No one could. No one still does to this day. I was alone, spinning, trying to catch my breath any chance I got.

Now I find myself in a position to be able to help some of those moms in a similar (yet completely different) situation. See the NICU that we were in for 150 days has been running a support group for about a year now. I was asked to be one of the graduate parent facilitators. At first, I thought no way. The anxiety I'd feel any time I even thought of that place was awful. No way I was going to go there in my free time, right?  I was wrong. So wrong.

About once a month, I get to sit down with parents who currently have a baby in the same NICU. I tell them our story in the hopes that they feel a little less alone. I let them know that it's ok to get angry. It's ok to be upset. It's ok to cry, to yell, to feel numb. Because I did all of that. But like any parent, I got up and did what I had to do for my children. I judged myself for these feelings, not knowing that probably more NICU parents than not went through the same emotions, even if only momentarily. They get to tell me their story. They get to show off their little miracle to someone who understands how bittersweet it is. They get to ask questions, to which most of the time I have no answers. But they still get to ask, which is something I wasn't sure was ok when we were in their shoes. They get to vent. They get to cry. They get to be parents with worries they never imagined. And they get to see that somehow they will make it through. Maybe not in the way they dreamed. Maybe not in they way anyone thinks. Maybe against all the odds possible. No matter how long and how dark the tunnel, there is an end.

6 years

Yes.  I've been slacking.  Life happens.  I blog when I feel the need.  Or when I have time.  Grad school has been getting in the way and taking up lots of time.  Get over it.

Must vent.  I hate today.  It is this utter visceral reaction to Friday the 13th, but this one in particular.  I was admitted to the hospital with M on Friday, March 13, 2009.  Exactly 6 years ago.  Today.  On a Friday the 13th.  I want to punch everyone in the face.

Everyone wants to tell me to "focus on the good" or "be thankful for how things turned out."  That makes me want to spit fire in your eye.  Yes, I have my daughter.  Yes, she is perfect in every way possible.  No, I wouldn't trade her for the world.  And one day, maybe that is all I will be able to feel on days like this.  But there is still this black cloud.

You don't know what I carry around with me.  You don't know what it's like to basically hear "if your daughter is born now, we will let you hold her until she dies."  You don't know what it's like to have your body completely and utterly fail not only you but those you love more than life itself. You don't know how it feels to know your body tried to kill your own children. You don't have those memories of needing someone with you at all time, because if she was born now, you wanted someone else to witness her life, no matter how short.  You don't know the guilt of the little nervous laughter because it was the only way you could avoid a complete mental breakdown.  You don't know the pain when you think of how you will have to explain all this to her one day, praying she will understand and be able to forgive you.

So if you are looking for a way to help today, and other, for your safety, don't tell me to look on the bright side.  Give me a hug.  Pass the tequila.  Hand me some chocolate.  Buy me a coffee.  Just sit.  Knowing that you can't possibly understand what I've been through or where I'm coming from.  And you don't want to.

Feeding Tubes - Dealing with it

I'll admit, my daughter's feeding tube still kinda grosses me out.  Just the changing part of it; something about that "pop" when it gets in place gives me the willies.  But you know, as a tubie mom, I deal with it.

Being a tubie mom doesn't mean I like or enjoy all the things that come with being a tubie mom.  It means I know that this is what's best for my daughter, and thus I will push through.  I will deal with that pop.  I will deal with that awful vanilla smell.  I will deal with the cases taking up my cupboards.  I will deal with the pump and bag malfunctions.  I will deal with the spills and the stains.  I will deal with the panic when I think I forgot part of the get-up needed to feed her.  I will deal with those beeps at midnight when I realize I measured wrong.

The random passer-by might wonder why I deal with it, and how. Because it's my daughter.  Because it's what is best for her growth and development.  Because she can't eat by mouth.  Because she's one smart cookie.  Because I would do absolutely anything, no matter how gross it is or uncomfortable it makes me, for her.  Because I would die for her.

So before you let yourself get too freaked out by her feeding tube, just take a deep breath.  You can deal with it too, like I do.  That pop lasts merely a moment; then maybe you can see beyond it and relish the beautiful little girl it helps.

Testify

Ok, so it's been a while.  Sue me!  Life has been crazy busy.  (HAHA!  I just misspelled busy as BUSTY!  My life definitely has NOT been that!)  We moved during the summer, just before the school year started. 

So anyway, yesterday we went to the state legislature to testify before a sub-committee on the needs of our kids.  Brought M with so they could put a face to the name/file/reality of this, as they aren't just random bits of information.  They are beautiful little people with limitless potential.  As we were waiting for our turn, I jotted down a few notes that basically became my testimony.  Here's a rough transcript (at least until we got to a few questions).

"We are here on behalf of our children J and M, and to ask for more consistency, transparency and understanding when it comes to caring for both of our children, both of whom have special needs.

Quick background - J was born at 36 weeks.  At about 4 months old, he was not meeting all his milestones, so we took him to our doctor.  Six years and countless tests later, we have learned that our amazing boy is legally blind and has epilepsy.  he cannot talk and has difficulty walking.  He cannot feed himself and isn't' potty trained.

M was born at 24 weeks.  If it can happen to a preemie, she did it - bowel perforation, brain bleed, eye and heart issues, etc.  As you can see, she is dependent on a tracheostomy to breathe, but also a g-button for food and regular monitoring of her shunt for her brain bleed and oxygen saturations.  When we as parents are not available, she needs to have professional nursing care, as we cannot just 'take her to a neighbor' as has been suggested.

As parents, we want to not only provide what's best for our family, but also continue to be productive members of society.  however, all too often recently, it seems to be more so a choice of one or the other, both not being logistically possible.  

I am a teacher and my husband is a sheriff's deputy, so you can imagine our schedules.  neither of us works a typical 8-5 Monday-Friday.  D often has to work late, unexpectedly to work accidents, fill out reports or answer emergency calls.  

Not only do I teach teenagers, but I am also evaluated on my professional development and involvement in the schools.  This often means taking a course to learn new technology - SmartBoards are the latest, working a track meet or sponsoring a co-curricular club.

These not to mention our personal businesses, all of which we do to try and make ends meet and provide for our children.

Yet we often meet resistance when trying to fulfill the professional duties.  For example, just before Thanksgiving, I was asked about working wrestling meets and basketball games, but i could not.  The managed care company for M says they will not approve any additional nursing hours since we are in the middle of our certification period.  So not only is this costing us money we could put toward the betterment of our children, but it is also potentially hurting my job evaluations.  We are left wondering if instances like these could cost us our jobs down the road.

We know these services are not cheap.  But we are here to put a face to the need, to show that my children are worthy human beings, not just dollar signs.

At the same time, it is not only cheaper to have children at home (versus in an institution), it is also better for the children, the parents, the family, and the community at large.

By having my children at home, we are able to constantly and consistently work on skills - feeding with J, mobility for M.  Elsewhere, work on these skills might be limited to 30 minutes twice a month for example.  They also receive the love and attention of their family, something every single child deserves.

As parents and extended family, we gain skills, understanding and empathy by having our kids with us.

Our community gets exposure to differences.  As we all know, we don't live in a cookie-cutter world.  We are not all the same.  And they only way we learn about and come to accept these differences is by being exposed to them."

The state Senator then asked a few questions about nursing not being covered during physical therapy sessions or the transportation to and from.  I proceeded to tell them that while extended family members may transport the kids, they aren't qualified to take care of M's trach.  A PT isn't qualified to put a trach back in either, and it has come out in PT sessions before.  Hubby and I went through 6 weeks of training in the NICU before we were allowed to take her home, because if it comes out, you have about 30 seconds to do something before she starts to suffocate. 

Here's hoping someone, especially lawmakers, gains some understanding from our story.

Incompetence reigns supreme

So those of you who know me, know that we've had many issues with insurance coverage for M.  Want to hear about the latest fuck-up?  (and if you have an issue with my language, please just click the little red box up to the right).

Insurance denied coverage for M to go to camp with her nurse.  Nursing company asked for an appeal and what steps needed to be taken on 4/15.  NINE days later, after I emailed to check on the appeal, we were told that it hadn't started because the MD didn't file the appeal.  Within three business days, and after being put on hold for over 30 minutes and talking to someone who had no clue what they were talking about, MD got the appeal scheduled for the morning of 5/3. 

Fast forward to yesterday, 5/16.  M goes in for a weight check (girl is putting on some pounds now!).  We find out that the morning of 5/3, insurance called the MD to cancel the appeal meeting.  When MD asked to reschedule, they were told no.  MD tried to call back and reschedule again, and they were told that they couldn't since "they didn't start the appeal."  Um, insurance told us MD was the one who needed to start it in the first place!

So after several calls - we called insurance, we called MD, MD called insurance, we called nursing, we start to get things figured out.  But oh no - I can't be that easy.  Because NOW they are telling us that the window in which to file an appeal has passed!  If they hadn't cancelled and refused to reschedule, it wouldn't have been a problem.  Needless to say, this isn't going to fly.  I think Hubby's head about exploded.

I don't know if insurance thinks we are going to bend over and take it or what.  If so, they obviously have no clue about with whom they are dealing.  I'm convinced that every person in that building shares one single brain, and that person is out back having a smoke.  In the meantime, Hubby is looking for lawyers and I am looking for state officials.  Either way, my daughter will NOT be penalized 1) for being disabled or 2) for their complete failure to do their job.

Spread the Word!

So I missed yesterday - sorry.  Kids took precedence!  Forgive me if I blog about the "Spread the Word to End the Word" a day late.

Retard.  Retarded.

Two of the most hateful, and hurtful, words in the English language.  I put it up there with a number of other words that I can't even bring myself to type.  N-word for African-Americans.  K-word for Jews.  S-word for Hispanics.  C-word for Asians. 

Yes, I realize that the true meaning of the the word "retarded" is "delayed."  I do not object to its usage as such.  Delay implies that you will get to your goal eventually.  It just might take you longer.  My children are both retarded in their speech-language skills.  But I can see the growth and progress every single day.  Their communication skills improve noticibly.  They will succeed, just at their own pace.

However, the majority of those who use this word use it as a derogatory term to mean STUPID, DUMB, IDIOTIC, etc.  Two very different meanings.  My children are far from stupid, dumb or idiotic.  And when someone uses the R-word as such, it is beyond hurtful.  You don't know my children (well, some of you do), so using this term in a derogatory way will bring out the pissed-off, short, Polish mom in me.  I will call you on it.  And odds are, I will not be nice.

People who claim that it's "just a word" have obviously never been in the minority.  It hurts.  It scars.  It offends.  it angers. But it also shows that those who use it are somewhat lacking.  If you use the R-word as a slam, you will NEVER reach your full potential as a human being.  You are CHOOSING hate.  Yet my children reach and push their potential every single day, loving everyone they come into contact with (ok, not the nurses when they have to give shots, but seriously...). 

And I'm not asking for top-down censorship.  Yes, this is America, and we have free speech.  You do have the right to say whatever you would like.  But we, as a society, don't have to condone it.  I want to see this word become as taboo as some I mentioned earlier.  No law is stopping you from using those, but if you have half a brain, you know those are simply not acceptable.  And the R-word is not acceptable either.

My children are loving, bright, fun, smart, witty, manipulative, amazing, happy, silly, excited, friendly little buggers.  They reach their potential - will you?

Feeding tubes are normal

Wow.  Been a long time since I've been here.  I swear I've been meaning to make it back, but life just gets in the way.  But as you may know (or if not, you do now!), I have a hard time with March, so let's just get back into venting.

First, kids are good. 

But my main reason for posting today is to bring awareness to feeding tubes.  You see, my daughter has one. 

Now I'll admit that I never knew what a feeding tube looked like until I had M.  I can now tell you the difference between an NG tube (naso-gastric), an OG tube (oral-gastric), and G-Button (gastrostomy).  Ok, so my medical terminology might leave some of you cringing, but I swear I know what I'm talking about. 

I don't want people to be scared.  M doesn't eat by mouth because she has what's called an oral aversion.  She hates it when anyone puts anything in her mouth.  And if you do get something in there, she has no idea what to do with it and coughs, chokes, gags, etc.  That doesn't mean that we don't try!  The girl loves licking suckers, spaghetti sauce, and recently queso dip.  She just never learned how to chew, so no chunks.

Because of this, you might see her with a tube attached to her belly from time to time.  That's how she gets most of her nutrition.  Yes, I was terrified of the stoma (hole in her belly that the tube goes in), but now it's well-healed.  She pulls on the tube all the time.  We clean that area just like you would have your kids brush their teeth.  And her "food" goes through a pump to get it in her belly.  Honestly, based on the way it smells, I'm sure glad I don't have to taste that stuff.  Bonus - she doesn't have to take any of those nasty medicines by mouth!  It all goes in the tube!  It's really just another way for her to get her nutrition.

As I said, I never knew anyone with a feeding tube until we went through it.  Now I've met many.  A former student said "hey!  I had one of those when I was little!"  A friend's little girl, who also has a G-Button, asked where my son was hiding his G-Button - she and M both had them, so my son was the odd-man out.

So if you see us, and M has her tube hooked up, don't be afraid.  It doesn't mean she's going to break.  You can't "catch" it.  She's a happy camper.  Feel free to ask; M loves to show everyone where her "button" is.  Just please don't stare or snicker.  She just eats differently.

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).