My poor oldest baby

Every mother knows that you can't protect your child from the hurts of the world, but GOD IT HURTS!

He did much better with today than I anticipated and I know he was angry, but we talked tonight about taking things gracefully, accepting apologies gracefully and being a bigger person no matter what.  As a friend at work said; it's hard enough for us full-grown adults and I'm expecting this out of a 16 year old.  He always has had to deal with adult details of life, what's new though?

I had finally gotten the nerve to call Cole's PC (pediatric cardiologist) today to find out about the MRI.  He called back right away and said someone was supposed to have called to schedule.  Okay, so let's go ahead.  They're getting the specifics but we do plan to go in February for an all day trip, no sedation MRI.  He broke the news, which I guess I sort of anticipated, that he does NOT qualify for the Melody Valve, so it's open-heart next.  I knew that the Melody required a conduit or something to use in the anatomy of the heart, but didn't know if what Cole had left of a PV (pulmonary valve) was going to be enough. He didn't have enough.  He said we could wait until summer so he didn't have to miss a day of school, but I told him that Cole and I had already had a conversation about timing.  He originally wanted to have it over the summer until he realized that if he did it this Spring there was a chance he could wrestle his Senior year which is this October.  The cardiologist agreed to move up the MRI in case he needs surgery.

I asked him what he thought after he compared last years echo and ekg to this years and he said that he had begun to see things in last years and they were still there this year.  Nothing significantly changed, but obviously there are electrical things going on there.  The MRI will verify if the muscle is too damaged to wait, failure or no failure.  I asked him if he could wait until next year and he said it's possible that's what the MRI will show, but he had the tone he gets when he really doesn't believe that to be the case.  I have this feeling he knows more than he's letting on and Cole does too, but we'll have to wait to see.  Who cares about the $1,000 for the MRI, I just want to know he'll be okay.  But, there's the chance before school lets out this year he will have had it.  I will try to purge that back where I've been keeping it all these years so I don't get over anxious

Then, about 3:12 today Brian called and said Cole was home from school.  Apparently, his 7th hour teacher decided he didn't have to listen to a 16 year old and didn't believe that he was supposed to leave early for a wrestling match 2 hours away.  The office said they announced it, but something must have been wrong with the intercom in the classroom.  The teacher didn't even try to ask the office or anything, he just told Cole he was wrong.  The bus indeed left without him on the night he was so excited about getting to wrestle varsity.  I left a message for the principal and called the coach to let him know what was going on.  They had no idea.  I guess they thought he just skipped?  The principal called me back to tell me he heard what happened and apologized.  He said he'd pay mileage if we drove him there, but I told him I had already asked Cole and since it's 2 hours away and weigh ins were in about 40 minutes from school letting out there was no way possible for him to wrestle.  He said he was going to talk to the coach and the teacher, but he couldn't imagine what they could say to not put the school at fault on this.  He told me someone would be apologizing to me.  I let him know that I didn't need it.  I was mad yes.  I was worried about how much it upset my child yes, but it was him to deserved to be apologized to.  I told him most of my concern at this point was making sure this never happened to another kid since they couldn't fix what they did.

I did follow up with an email.  I think the teacher needed to step back and realize that you don't really know a kid or people.  Of course I didn't say that, just thoughts.  He needs to know that kids aren't there to get out of school.  Cole has never tried that.  And at the very least he wasn't a jerk teenager and didn't just walk out though apparently it crossed his mind.  I told him he made the better choice.  I told him that if Cole has surgery and depending on the timing every match is a match he gets to have.  We don't know what he'll lose with surgery and I hated seeing him lose one over this sort of thing.  I'm sure he had no idea he had a heart condition.  Not many do know.  But those who don't know anyone with one don't know the things they take for granted in life.  Just like I don't know what some others don't get to do because of what they were handed in life.  I'm just trying my very best to keep this kid in the activity he enjoys, keeps him healthy, is great for his esteem and is something to enjoy in high school for a limited time.  Take advantage that the cardiologist finally caved and let him do it.  Take advantage that his heart has done well through it.  Be the kid that's rare to make it 16 years after a transannular patch with monocusp repair of tetralogy.  You don't know what tomorrow will bring, so get the most out of today.  This has been my motto in life.  I've seen too many others wait for tomorrow and it never comes.  I want to enjoy my family today to the fullest and want my kids to enjoy their lives to the fullest.  Their happiness is everything.

I couldn't make it all better for Cole when I got home tonight, but I started off with a hug and then told him all the details of the day.  I think he knew about his heart, so he just nodded, but he internalizes, so he'll fear the surgery and not want to talk about it.  That's probably best.  Only talk about it when and if you have to.  Just hopefully, he's not internalizing anything I need to know about, but I think that couple of hours before me getting home did him some good to blow the steam off....and the fact that his dad told him to go hunting which is a great hobby for stress.

Chugging Along

We're 6 days into 2014 and still chugging along.  The kids are still not back in school because of the snow storm.  We had pretty close to 10 inches, so they're out again tomorrow.  Cole did take the truck to drive to work Sunday night.  The Sunday night manager at McDonalds is not very nice and gave him a hard time about coming in because he didn't come in for ICE in December.  He stood up for himself and told her there was a big difference between ice and snow and those that live in town and those that don't, like us.  He was also the only non-manager to show up, but she was still nasty to him.  I told him that life is full of supervisors like that and just to do his best and deal with the Sundays.  After wrestling he can look for a new part time job, but make nice until then.  I'm hoping he finds one, but I told him regardless if she gets too nasty it's not worth this in high school for a minimum wage job.

It's been a long few days due to the approximate 10 inches of snow we got and sub-zero temps.  The kids are still out of school tomorrow and haven't been in school since the middle of December.  The cats and dogs are rooming together in the garage.  Oreo (the new cat) is getting used to the dogs since he's so close to them now.

We're hoping to go look at new tables again this weekend.  I'm just not sure I'm ready to spend the money, but our table is just too small now.  We've have it for over 10 years and now that the kids are getting bigger there's not enough space with the leg on each end.  So we're hoping to find a trestle table that will fit 7 comfortably.  The guy in the store this past weekend looked at us like we had two heads when we said we needed to seat 7 every night.  And yes we do eat at the table as a family every night.  When Cole has late practice he misses sometimes, but 90% of the year is all 7 of us eating together.  Our kitchen table gets a ton of use.  Now we need to find the best use for our money to find one that will grow with us, but fit in our small kitchen area.

Work is work. I made it in today regardless of the weather.  It's always quieter and kind of nicer on these days, but the commute is long going so slow because of the snow and pack snow (ice).  By the time it clears up this week we'll get more.  I always worry about Cole being on the roads.  He seems pretty cautious so far and I'm thankful for that, but there are still other drivers out there.  And crazy ones in this weather sometimes.  We did send Jaemin outside Sunday before the temps dropped.  He was so excited to go out in the snow.  He doesn't like cold much, but thinks he's something else in the snow.  Chelsi stayed out much longer than we expected too.  She's not much on cold either.  I looked out and at one point wasn't sure how Chelsi could even see.  I couldn't see her face at all.  She had a head warmer on and a scarf wrapped around her face.  She got to use her Christmas sled and boots.  She looked so stinkin' cute out there with her pink boots and cat head warmer.

Hopefully 2014 will be calm.  Probably depends on the cardiologist and what he says when he calls back.  Hopefully soon.  I'll have to call him this week if he doesn't call.  That should have been enough time for the team to meet even with the holiday weeks.

Happy New Year 2014!

I'm hoping for a really great year.  One where things settle down in the world and maybe society finds their way back to more simple times where not everything revolved around money and one upping, but helping each other and buying what you can afford.  I think that alone will help the world and what kids are growing up to believe is the new norm for America.

Last year was good, but I'm always hoping for better.  A better outlook for all of our futures, fun, a few more breaks.  Not that life was as difficult as others are dealing with.  I just had one of life's simple pleasures today.  Jaemin really enjoys 'What does the fox say', so we found Chase's old MP3 player from many moons ago and got it up and working again.  I downloaded the video for him, finally got it to work on the MP3 and hooked Jaemin up to it.  It's one of very few things that settles his tendencies. He really does stay still when he watches and listens to that song and video.  It's amazing.  He listened for a long time and then looked at me (actually looked in my eyes) and said "thanks for putting that on mom, you're the best, you're beautiful".  He rarely says that much all at once and it was so sweet and then he gave me a little kiss on the cheek.  So, I'm pretty thankful for 2013 bringing 'What does the fox say".

Other than that we rang in the new year very quietly as usual.  We just stayed home and went to bed at the normal time.  'Til the neighbors fireworks woke me up at midnight.  That was a 20 minute show I tried to sleep through and then woke up with a massive headache.  My TMJ and sinuses are flaring bad today.  Not a good way to start off the New Year, but could be worse, we're all together today and that's just nice.  I just sit thinking about what this year will bring.  Haven't heard from the cardiologist yet, so wondering if it will bring surgery for Cole or not?  Can we figure out a vacation we can do maybe?  I'm waiting to find out what's going on with Cole on that.  We may NEED a vacation depending on what's going on with his heart.  How's Jaemin going to do in Kindergarten this year?  That's probably my biggest fear.  Will the school really help him enough?  His sensory disorder really hurts his ability to behave in a 'normal' manner and I get so afraid that if he gets the wrong teacher that doesn't see how great he IS, they could hurt his self-esteem and make him feel bad because he's different.  What if he doesn't know how to handle all of the other kids, daycare is so limited, when he gets in that situation.  He goes with the flow almost too easily.  He is definitely socially delayed and I worry so much about him.  I just want him to be okay and safe and happy.  It's not because he's my youngest, at least not only because he's my youngest.  It's because he's vulnerable.  He's special.  I wish the world could see how special Jaemin is.  Maybe that's what 2014 could bring to me.

Well, I guess we'll see what 2014 has in store this year.  As far as me and my family and the above worries, wishes, I hope it brings more happiness, health and closeness for the 7 of us.  This is so important to me.

Happy New Year All!

Trident Cases

Be wary of TridentCase.com.  Their products can be very faulty and they do NOT stand behind them.  I have one on my phone and thought it worked, so why not order one for the Vizio tablet.  Well, it burned up the tablet and now it won't stay on.  Trident finally, though I had to insist, refunded the money for the case after I sent it back.  But, they will do nothing for ruining a $200 tablet!  All they can say is that they are trying to replicate the issue.  Right.  I bet.  They don't really care is the truth.  They don't even return emails.  They're automated email says 1-3 days, but the truth is they have NEVER emailed me unless I call them.  Their customer service truly lacks!

Buyer beware.

Christmas 2013

The kids didn't get anything extravagant, but they got pretty much everything on their lists and I think they enjoyed it.  We decided to not rush Christmas this year by trying to run too many places and stayed home on Christmas Eve.  We went to mass, which lasted 1 hour and 20 minutes.  I think it almost killed Jaemin.  He was really struggling to control himself for so long.  He just kept asking how many songs were left, but they sang everything at this church, so he counted everything.

We came home and made their favorite snack food Christmas.  We had smokies, shrimp, wings, donuts, cinnamon rolls and whatever else.  Each one got to pick a food for us to buy.  Then we watched Elf for a bit.  They opened all their presents and just played the rest of the night.  Jaemin was pretty excited Santa would bring him a Pororo table from Korea.  And he really liked the Monster Truck Great Grandma W got him.  Cole was pretty practical this year and got lots of things for hunting, his car, etc.  Chase has a drawer full of hoodies now, so he should be in good shape.  Kaelin is full up on clothes and accessories.  Chelsi got tons of shoes and finally got a boy doll for her Barbies.  She now has Rapunzel and Flynn Rider.  I actually got a present this year.  Brian saw my mirror that had broken a few years ago and got me a brand new mirror.  Just a simple little hand mirror, but I finally got a new one.  All in all I averaged out to my budget of $100 per kid.  I tried to work as many ebates, Kohls cash or whatever reward I could find into everything.  So after Christmas, I should have a decent little check coming.

I think they're all worn out now....just fairly quietly playing Wii.  We did do what a coworker told me to try.  We put no labels on the gifts from mom and dad and they each just opened a gift and had to decide who's gift it really went to.  Fairly easy until we got to hair accessories.  We got it though.  You can tell from some of their faces, these were not their gifts.  :)

Here are their own gifts.

And each other's gifts.

Then they played.

We got to go to both of their grandma's houses on Christmas Day and cousin E and uncle B came in from NY.

The pictures of E and grandma kissing cracked me up.  He started out smiling in the one and then looked at her out of the corner of his eyes.

Last Daycare Program

for Jaemin

So cute.  He had to read a Christmas story to the other kids with the other 5 year old, then they sang songs and even bowed.  Jaemin played a lumberjack cutting down the little trees in one song and it was silly cute!

Oh, and last weekends snow.  Well, it wasn't much, but Jaemin had a blast while his brothers and sister and dad shoveled.  He's happily eat it or make a snow ball and nail Cole with it.  He thought he was cool stuff!

Heart Update

Cole had his annual today.  We're starting to prepare, but there's still no for sure of when he'll get repaired or what they'll do.  He hasn't had an MRI since 2011, so Dr. R said he wants it in 2014.  After asking a little more about what happens after that, he decided it would be best to do it earlier, rather than later.  He's going to call tomorrow after talking to the cath specialist and then we need to have a list of Wednesdays we're available to drive to the hospital (2+ hours away).  It's obviously an all day thing.  No stress test this time though.  He said there's still a chance he could qualify for the Melody Valve.  It's only been out for about 4-5 years and they've been using it for 1+.  There's no lifetime on the valve yet since it's not been out long enough to know yet.  That's what he's discussing with the team tomorrow.  He's going to compare today's echo/ekg with last years, but he didn't think there was a great difference.  There's still a chance Cole can go another year without his pulmonary valve since he's not seeing any changes yet and not feeling any signs or symptoms of heart failure yet.  However, MRIs are the better gauge for failure of his right ventricle.  Obviously his right is still enlarged.  That will not go away until the valve is put in.  It's still that fine balance between waiting long enough so you don't have to put the heart through unnecessary surgeries and not waiting so long that the muscle's not repairable, which is when you could run the risk of critical failure needing a transplant.  It's rare, thankfully.

He said they team may not be able to tell from the tests today if he qualifies for the Melody and may need the MRI to decide for sure.  Then, we'll kind of go from there.  If he gets the Melody, he'll only need a cath for repair and need a weekend for recovery and can even resume wrestling a couple of months later.  He just needs scar tissue to build up and strengthen the repair.  Then, they're expecting, like other valves it will buy him a few to several years before he needs another valve.  That's the going rate on valves.  For whatever reason, not having a valve at all, he's survived longer than most patients with only a patch for a valve.  It's typically just a few years and we're going on 17.  Just over 16 to be fair, but Doc says it's amazing.

He said once he has the MRI if they decide he needs the valve it will not be a wait and see or lets schedule it next year like they originally thought.  It will be fairly quick at this point.  That's probably better for Cole so he doesn't get any more anxious than he will anyways.  If that even makes sense.  If he needs open-heart this time around and we do it before May, he knows he can recover in time to wrestle his Senior year.  He may not land on Varsity, but I am so proud of him no matter what.  He's very strong.

Other than that it's the same old same old.  He will never get away from open-hearts.  He has a lifetime of caths where they will insert a valve with stents or open-hearts to repair and replace valves.  The only thing I know is that it will be a bovine valve.  He said for right side they do bovine, you don't do mechanical and he only has to be on aspirin afterwards, so that's great!

One day at a time and hopefully we can get him in in February, so we can see what's going to happen.  So much for hoping I wouldn't meet my high deductible next year.  Those MRIs are EXPENSIVE!  I would just like to NOT meet it one year, but my money's well spent keeping him healthy.