Tetralogy of Fallot and MY Kid

Like most parents, you live your child's lives. Not live through them, but live for them. Meaning if they're going through something you read about it, learn about it and guide them or console them if possible.

Right now my focus is on Cole. He did extremely well, but now that his heart's been 'messed' (their words not mine) again, it can be thrown off and forget what to do. His sternum has been cut open once again, so this will make future surgeries more fun for the surgeons because each one can add scar tissue and adhere the heart to the sternum. The very reason they try to find alternatives to limit the number of open-hearts one person has.

A lot of people have asked what he has. Tetralogy of Fallot sounds so huge and technical. It's really:

1) Pulmonary Infundibular Stenosis A narrowing of the right ventricular outflow tract.

2) Overriding aorta An aortic valve with biventricular connection, that is, it is situated above the ventricular septal defect and connected to both the right and the left ventricle.

3) Ventricular septal defect (VSD) A hole between the two bottom chambers (ventricles) of the heart.

4) Right ventricular hypertrophy The right ventricle is more muscular than normal, causing a characteristic boot-shaped (coeur-en-sabot) appearance as seen by chest X-ray.

Cole actually had a pulmonary valve at birth, but due to #1, it was removed and a patch put in it's place making it a monocusp instead of bicuspid. Cole had 2 large holes instead of 1. These holes are the actual reason tet babies turn blue or have cyanotic spells. Once the holes are fixed the baby should no longer turn blue unless the patches fail. After this, not having a pulmonary valve or one that doesn't work right, the blood will regurgitate back into the right ventricle instead of flowing to the left. This causes an enlarged right ventricle and low blood flow to the rest of the body. It can also cause failure of the right muscle and it can forget how to work or loose elasticity and not work even after repair, requiring transplant.

They had been watching Cole so closely that while the upper leakage at his pulmonary valve had caused such enlargement that another lower leak developed, they did surgery before it really (or they think as of now) began to loose it's function and elasticity. Because of his condition and where the repair is, open heart will always be necessary over going through a side rib. However, it's possible now that he actually has a bovine valve with a stent already in place, the next surgery may be prolonged by installing a Melody Valve via cath instead. It's new, so they do not yet know how long this will put him off for full valve repair via open heart surgery. Their goal as of now is to make it 10 years on this one.

The reality is that in the support group I belong to for adults and children with tet, some do not survive, some require transplants, some develop rhythm problems. All of these are extremely life threatening, but many can do well with the right interventions and great physicians. Ours will be one.

One week post op.....open heart surgery

The grandparents have stopped by, one of his aunts have stopped by and his girlfriend has been here, I think, 3 out of the 4 days.  Things are beginning to die down.  Cole has started his homebound schooling.  He basically, has to work on his own and get done what he can when he can.  The catch is the more on-top of it you stay now, the easier it will be to transition to being back.  They just have to figure out how to administer the tests and quizzes here, so he doesn't lag on those.  His algebra teacher came last night and gave him all his homework and then stayed 2 hours to explain how to do what.  He got all of it done last night.  He got his history, from last night, done this morning.  The principal stopped by this evening to drop off more.  A LOT more history.

He goes back Monday for a post-op visit with the surgeon.  They'll check function with the ekg and echo and then check the fluid on his heart with a chest xray.  The nurse already told us going back to school is going to be up to us.  She doesn't want him jostled around, so we're pretty hesitant to do it too soon.  We'll see what they say after the xray.  That will also tell us if his sternum is starting to heal or not.  I would expect late next week at the absolute earliest.  He may get stir crazy before then.  He is going fishing Sunday since it will be warm enough.  He's not allowed to drive or be on a boat.  Doc said bank fishing only, but he'll take it.

I'm very impressed with him.  My mom came yesterday morning and took him for a walk down the road.  He definitely does better than I could have have imagined.  He said today he was able to shoot pool.  He said it's sore, but he can do it now.  So, he is getting some range of motion without severe pain.  We still have some oxycodone if it gets bad, but he hasn't taken anything except Tylenol and Motrin since leaving the hospital.  I suspect going back to school could be hard and he may end up sore that night.  The doctor says when he starts driving in a couple of weeks he could get sore trying to make turns.  We'll see how it goes.

He's standing up straighter.  His shoulders are going back a little.  He's stretching out a little.  He's definitely gotten skinnier, if that's even possible.  But, he'll get back.  He'll have to make a conscious effort.  His appetite has decreased, but some of that may be because he's not as active.  Day by day it will get better.

Day 4 - Post Op Pulmonary Valve

So, last night we had gotten moved to TCU (Transitional Care Unit).  He said he woke up in the middle of the night and was in more pain (not near what it was the rest of the weekend) than usual and they gave him another oxycodone.  Other than that, he's been just on Motrin and Tylenol.  He was walking everywhere they needed him to go, like xray, with no issues at all.  He would get up like he never had anything done at all.  The nurse told him to walk to the nurse's station until she saw him get out of bed and walk with ease.  Then she told him to make some rounds instead.  He drastically improved last night.  They redid ekg, echo and xrays today.  There's some pretty good pressure in the valve right now, but they said that will get better.  It's a big valve that they had to make smaller at one end to attach.  They still think he's going to grow, so they went with a bigger size bovine valve.  His lungs are still showing fluid on them, but they think once he really become a little more active that will absorb, but they put him on lasix for the next week just in case.  We go back (2 1/2 hours each way) to the surgeon on Monday for another check up and back to the cardiologist at the end of the month.

Needless to say they were so impressed that they sent us home late this afternoon.  Insurance had us approved through Thursday as a week is pretty standard for this procedure.  This 4 days (including the day of the surgery) is pretty much unheard of.  He still hopes to go back to wrestling this fall and I do think he's tough enough to do all of this.  I'm really impressed. He was upset with that chest tube.  And he did get very visibly upset.  It never once made him weak.  It could have made anyone on this Earth cry.  But his recovery has been amazing and he IS very strong and very tough!

Day 3 - Post Op PV Valve

It's Sunday.  He was moved from picu to tcu at about 3 this afternoon.  The chest tube came out about 8 or so this morning.  As of last night they didn't think it would, but the Dr decided it was ready this morning.  It took longer than they expected because he was upset.  That thing had been causing so much pain that I think the idea of it coming out upset him as much.  He hasn't had any oxycodone since early this morning.  They now just down to toradol and Tylenol.  He said his chest still hurts but he could breath.

His demeanor towards me hasn't improved much.  I've resigned myself to just not offer anything or say anything unless I have to.  The majority of the time, if I do I'm wrong or he just gets annoyed.  So mostly we sit in silence.  He does fine when the nurses are around, though he tries to get out of doing what they want him to like sitting in a chair, walking or doing his Spirometer tests.

When they did get him to walk today, he took off like it was nothing.  It didn't seem to bother him at all.  He's creepiest just sitting in bed. I don't know.  I guess I try to hard, because I just make him unahappy.

At least this morning I got to visit with my friend Jane.  She lives in the area, so it was once to sit and talk with an adult...and not someone who constantly rolls their eyes at me.  Hope tomorrow gets better.

It's not personal

Or thats what I tell myself.  He doesn't want to see anyone.  He wouldn't even let me take a picture for the little kids kids since he didn't want to see them.  As you can tell I took one while he snooker for a second.  He's almost more irritable today.  I'm now in the lobby.  I just had to step out.  It's been a couple days since he had his retainer in and his teeth moved the last time he skipped just one night.  I insisted he wear it for a bit today since there's no longer a choking risk and then he can wear it again tonight.  He was pretty ticked I wasn't and couldn't give in.  I just needed to step out and figured I could wait for Brian and the kids instead.

Day 2 New valve

I shouldn't really say new valve since he didn't have a pulmonary valve, but it is new to him.  He was leaking so bad where it was supposed to be that his right ventricle enlarged so much that it had caused a lower valve to stretch out and begin leaking.  The surgeon said once the bovine valve was in the ventricle reduced some and the lower valve stopped leaking. 

He didn't sleep real great past night and they told him if he didn't start taking deeper breaths he'll further his risk for pneumonia.  His chest tube is still causing quite a bit of pain despite oxycodone, so that's making it harder for him to really breath.  Once he stops draining so much blood and fluid they'll remove the chest tube.  Probably not for a day or two.  He's not a happy camper right now and doesn't want to see anyone.  I told them everyone will have to respect that as long as he's in pain and doesn't allow himself to slip into any sort of depression.  This reaction is quite common after this painful of surgery from what I've read.  We think step down tomorrow, but I'm going off a doped up 17 year olds memory for that.  The rest of the family is going home today.  I think that will be better for them and they can settle in before school on Monday.

He did get his Cath and 2 lines out this morning, so that's an improvement.

One of the longest days ever!

We got to the hospital at 5am.  They took him to put him out by 7 and had him opened by 9.  They said he scar tissue from the first heart surgery wasn't too bad so they didn't have any problems getting to his heart.  They had the valve in and he was off bypass by 1pm.  He wasn't happy with the breathing tube so they sedated him a little more and we finally saw him around 4 pm.  Not quite as long as last time, but close.

He was in quite a bit of pain and as soon as he was even slightly coming out he began signing to the nurse what hurt and that he needed his tube suctioned.  Thank goodness she had had some ASL in college.  We got in there and she looked at us funny and asked if he knew sign.  We told her that was his foreign language in high school.  She was amazed he was lucid enough to do that.  What they didn't catch he signed for his iPod and typed out short words.  They're really amazed by how strong he is and once again he amazes his mother.

Hour by hour, then day by day or will get better.  This is what I kept telling him when he was first upset.  I wanted to cry for him so bad, but that would have made things harder for him.  I pray things will just get more and more awesome for him.

Not what I was expecting from today

I was thinking I'd go to work and then tonight I would pack for the hospital for the 7 of us. God laughs and laughs at my plans.  Way too often sometimes.

Brian left at 6am to bring Chase to football as he always does.  I got up a few minutes later and took my shower and started getting ready.  Knowing I needed to leave before 7 so I could get to work early enough to finish making up my time for Jaemin's speech.  Thankfully, I worked a lot extra last week, so I don't feel too bad and it was only a few more minutes.  But, I make things up to the minutes so I have no guilt.  Anyways, I went to get Jaemin to brush his teeth like I always do and noticed he felt a little warm.  He'd had a cough and runny nose for the past few days, so I was a little more concerned.  His temp was barely over 100 and normally I would just make sure he was comfortable and send him to daycare because it seemed more like a sinus infection which he gets A LOT.

I decided we couldn't risk him picking up anything extra at daycare and we needed to get him seen by the doctor to make sure there was nothing I was missing to expose Cole before his surgery.  The hospital wanted the diagnosis so they could decide if it was still safe to do Cole's surgery and we needed to be able to plan what we were going to do with everyone for the weekend.  We were concerned with him being sick enough to get Cole sick or to get  other kids at the hospital sick.  The doctor decided it could be a sinus infection, but diagnosed him with bronchitis due to the cough.  He said it was more or less just a diagnosis he could put down since there wasn't much other than cold like symptoms, which was fine with me.  He said if he'd had the flu it would be much worse and he was vaccinated, so it should be okay.  The hospital said we could proceed with surgery and they'll check Cole out thoroughly tomorrow to make sure.

Jaemin's temp would bounce between 98 and 100.5 mostly, but did hit 101 once.  I never had to medicate him, it just went down on it's own.  The doctor did put him on an antibiotic just in case it was bacterial and we could knock it out before the day of surgery.  It's been gone all night this evening, but fevers have a tendency of coming back in waking hours.  We finally came up with a plan.  Unless he gets worse, we're all still going.  We'll keep him at the hotel instead of letting him go to the hospital if he still has any fever.  We'll keep him in our room instead of with the other kids at the hotel.  Then, if he's still sick the day of surgery all of the kids can stay at the hotel with their grandmas.  I felt better once we had the decision and it seemed like it would work for everyone.

Ready for this to be over.  Cole says he's not nervous.  He said Friday morning, he'll be nervous.

The Big Day is Almost Here

We're definitely on the final countdown to H-Day.  I've started packing things I'm afraid of forgetting (i.e. the boys' extra set of retainers).  Tomorrow night will be time to pack the bottoms for everyone after we've done laundry.  Then, Thursday morning I can wash my towels so I can come home to clean towels, wash the darks and fold them so that's done for Brian when he comes home.

We've been discussing with the Principal and teachers, in more depth, the plans for the next month for Cole.  I've been wrapping what I can up at work and can remote check my email to delete as much as possible and the rest will have to wait.  Cole spent the weekend with friends since it will be the last for a bit while we try to let him recover and try to keep him from catching colds, etc.  It will be extremely important to keep his heart extra healthy for awhile since infections can more easily go to the heart once you have anything foreign attached.  The valve can actually create an extra risk.  It will all be good though.

We've got things more or less figured out.  Where who will be when and how things will get done or what won't get done until I get Cole home from the hospital.  The deal with Cole has been to focus on grades the last quarter, no working and just trying to take care of himself.  I'm trying not to think about the cost of the hotel, the food and the hospital bill.  Just get through Friday.  And hopefully, the next couple of weeks will go by quickly so that he can just get back to normal and hopefully feel really great after this.  My plan at the moment is to make sure he goes back to his cardiologist one more time prior to returning to wrestling in the fall to make absolutely sure his heart is healthy and good enough to handle it all.

One more day.  Finish packing.  Finish any emails to schools.  Get there.  Have fun, just the 7 of us Thursday night.  Try to forget about it for one night.  Get through Friday.  That's all I have.

Daughter's of the American Revolution

Okay, I thought this would be interesting.  It's neat that a past can go so deep in your family.  I did my ancestry for a project for Chelsi and found that my dad's side goes back to Charlemagne and that I can get into DAR  if I chose to.  Chelsi's gifted teacher didn't think they would exclude her because of being an adoptee, so she said I should pursue so the kids would have the possibility of the scholarships, etc., that go with.  

I emailed our local chapter because they were having a how-to meeting soon.  I asked if there would be any issue with the adoptions and they said "I’m sorry adopted children would not be able to become DAR members through you, unless there is a direct blood relationship.  Thank you for your interest in the DAR"

How sad is that?!

I responded "There is no interest.  I am sad that in today's society any organization built on the ideals that the US is built on does not support adoption.  My children are mine.  I am a direct descendant and therefore, my daughters are just as much entitled as my biological sons.  This is THEIR history as much as mine and it is their children's history.  I would never want to be a part of something so stuck in history that they can't see a future."

I just can't get over how sad this is.  I posted to our adoption group and one momma had a great point.  What about all of the aunt/uncles, grandparents, etc. who raised children as their own.  They may have been blood, but could have been blood from another side, not truly making them allowable by DAR.  Or what about all of the secret adoptions where the child never even knew.  They weren't related by blood, but they raised them as blood.  They qualify for DAR, but my kids don't just because we're forthcoming and it states they were born in Korea on their birth certificates with our names as their parents.  

Guess what DAR.  You are a sad, sad organization, well behind the times and they are my kids, we are their parents and our pasts and ancestors are theirs too.  They don't have access to their blood ancestors and we have no problems sharing ours and our lives with our 5 kids!

Why do people have to let you down?

We're supposed to trust the nurse coordinator at the hospital.  We're supposed to trust the social worker at the hospital.  They offered to pay for a night at a hotel so we could come to meet the surgeon the day before Cole's heart surgery and then be there by 6 am the next morning.  I asked if they could go ahead and get 3 nights and we'd just have to pay for them if we could so the kids could see him before Brian took them back home.  They say sure, it's all fine, we'll take care of things.  My punishment for trying, for once, to be patient and let other do ended up in a night of crying for me.

I decided, tonight, I would call the hotel she mentioned and see if the reservations were made.  They were.  For one night.  And the other 2 nights they were now solidly booked.  On top of that they hospital assured me they understood the size of our family and would get 2 rooms if they had to.  I asked the hotel what they booked as and it was for 2 adults and 2 kids and we were not going to be allowed to stay even the one night.  Well, don't you think that's something we would need to know before that night?  Don't you think it would have been a good idea to have some attention to detail and listen.  Don't you think it would have been a good idea to keep in touch with the family to have let us know what was going on.  Not this hospital.  Terrible.  I just burst into tears.  The stress is starting to set in and I'm starting to get nervous and this did NOT help anything.

I spent 2 hours trying to get things sorted out and find something.  I don't even know the city very well, but at this point, we were just trying to find SOMETHING we could afford that was reasonable and would actually allow our family size without paying $250/night.  Ummm...yeah, we wouldn't stay if that were the case.  I finally found a Hampton Inn that's a 20 minute drive, but that's better than 2+ hours and having to leave at 3:30 am with 5 kids.  They are allowing us to cram in one room and they gave us an $80/night rate.  It's doable.  It even had good reviews on Expedia.  At one point, I was struggling so hard to find anything, I thought I was calling the hotel's 800 number and it turned out it was Expedia.  They did try to help though.  As I was talking to her she said I sounded like I had been crying and that's all it took for me to burst out in tears again.

At least we finally have somewhere to stay.  I was wondering what we were going to do for a little while.  I called so many places and we either couldn't afford them or they said we were too big, even for just one night.  Now, if we can just find it.  I've Mapquested it out and I'm a little confused, so hopefully we do okay.  Once we find it, we'll be fine driving back and forth to the hospital, it's just the first time.  When the directions say U turn first thing, I get a little nervous.

I just hope they don't treat everyone like this and it won't be my choice the next time he needs another surgery, but I hope he won't choose the adult hospital affiliated with this Children's hospital after how we've been treated over the past 2 weeks.  They should be more organized for families than what they are.....BY FAR.

Chapter closed

After a little while of thinking about it and watching Cole's grades go down for the last month, we talked in length tonight and asked him to quit his part time job.  He is stressed about his surgery and between that stress and the job working him until 11+pm on school nights, it's just not working well.  The doctor is writing a note because Cole is becoming progressively tired with his condition.  It's too much to go to school fulltime and attempt to work parttime.  He wrote his letter tonight and will bring it in with his doctor's letter tomorrow.  They had him scheduled for Wednesday through Sunday.  That's just too many hours during school for most kids let alone him with his condition.

He's going to attempt working again, elsewhere, in the summer after he's recovered.  He needs to concentrate the next two months on recovery and school.  Getting the energy just to go back to school will not be easy.  We've got most of the school stuff worked out.  The principal just has to get a teacher to do the homebound teach for about a week or so to catch him up on 2 weeks of missed work.  I asked the principal to teach Algebra II since that was his specialty and thankfully he agreed to it.  Then, Cole will be allowed to return to school for 1/2 days for the first week.  We're working it out to where he only misses one core class and hopefully the teacher will work things out for the other 2 classes to just let that week go.

I'm hoping after he recovers for a couple of weeks, he'll feel so much better and realize just how down his heart was bringing him and find that push he needs to pull himself out and back into the real world to enjoy life a little more.....do better in school, etc.  I think he can do it and I'm anxious to see how it all works out.  Just praying for a great recovery for him.  As easy as possible would be great since this is the first time he'll be able  to remember the surgery and there are plenty more ahead.

So much done today

I'm trying to get a lot done before we go to the hospital next week.  I'm trying to make sure that since we'll miss our usual grocery shopping day, I have enough for Brian and the kids while I'm gone.  Trying to get as much ready as possible.  Next week is washing Cole's blanket to bring to the hospital.

Today, we got the house cleaned, monthly shopping done, downstairs steam cleaned and my haircut.  I always trim in between cuts.  I just can't justify going and spending $25 every 6 weeks.  So I usually trim the back in between so I can wait about 3 months between cuts.  I always do fine, but I had it too short in the middle of my neck.  Brian was really afraid, so I had Kaelin cut  it.  Yep, I told my 11 year old how to do it and she confidently put the scissors in one hand, took a comb in the other, straightened my curls and trimmed away.  She really didn't do bad at all.  Brian could NOT believe she even attempted it.  So am I stupid, brave or very trusting?

So tired and glad the day is over and so looking forward to next week being over and Cole being okay.

17 Years

of Cole.

He was my first born.  Like all of the other kids, he'll always be my baby.

Love my Cole Cole and I hope he has many more wonderful birthdays.  it took a little extra effort to get these candles out.  I just grabbed some and didn't realize they were relights.  And they, apparently, were really good ones!

Making an effort

to get back into taking pictures.  Not professional, but fun snapshots of the kids.  I've just not taken the time to grab the camera in so long and poor Jaemin really is the typical baby and has fewer pictures than the other kids, so I'm going to really, really try.

Cole's Therapy

We decided that between Cole spending so much time at his friend's house so he can play pool and needing something for him to do inside while he recovers from his surgery, it would be good to get a pool table.  We had been thinking about it for awhile and kinda watching, but we kicked it in a little bit when there was more of a reality he'd probably need his heart fixed again.

We finally found a good deal on a table on craig's list and put it up today.  We had to do a lot of purging, which really just meant throwing out puzzles that were missing half the pieces, etc.  Not a big sacrifice.  We actually were able to rearrange the rec room to make a little more sense and now there's about an 8x10 living room area (seriously small I know) and then the bookshelf with some toys and books is lined up in the hall from the garage and then the pool table area.  But it works and the kids are super happy....at least the older 3 that can play pool.  We figured with 5 kids, it would be a good investment and way to spend more time together and also to get to know their friends.  We played several rounds tonight and had a lot of laughs.  Mostly at the expense of Chase and I because we're so bad, but who's really keeping track.  The boys thought the gloves that came with the set were pretty funny, but then got attached to them saying they could shoot better.  And one of these days someone will have to google what the set of tiny balls are for.  I have no idea.

We were playing a game where we each had a number and you had to make sure it didn't get knocked in.  If it did you were out.  Brian couldn't remember which one his was, so I reminded them they needed to keep better track of their balls and well, Chase couldn't stop laughing.  Such a 13 year old.

And when I asked the big  boys to show me their gloves, little man Jae had to join in with his brothers.  That his hand front and center.

And my little Jae loves his picture taken and despises wearing clothes.  This is usually all he'll wear.  Needs new Ninja Turtle pants.

Such an awesome gift!!

Korea found a baby (younger) picture of Jaemin.  I've never had one until he was 5 months old and sitting up in Seoul.  Nothing prior to Seoul.  I had asked before and they said they had nothing.  But, I asked again and they found this.  It looks to be newborn and he looks so much like Chels (side by side).  He IS SO cute and looks just like the Jaemin I love today.  My heart just beats.

this is my truth

Maybe if I actually write it all out, I'll accept it and give my my own hopes and dreams for my kids and let them have their own.  I shouldn't even say hopes and dreams as much as  letting them suffer the repercussions of their actions or nonactions.

I love my kids, I love my husband, but we are not perfect.  We're not perfect spouses, we do not have a perfect marriage and we do not have perfect children nor are we perfect parents.  My struggle is and has been, for a long time, watching Cole  struggle so much in school.  I sometimes wish I had known then what I know now.  I wish I had known that heart conditions come with neuro delays in emotional  and social areas and ADHD is extremely common to go along with the difficulties of a heart condition as serious as his.  Maybe then, I would have gotten an IEP.  Then, when he was younger would he have gotten more help and been a more  confident student.  Maybe he just really never did care?  Maybe it's time that I just let go and realize that regardless of his inattention to school and the ability to really dig in and study due to his heart condition or maybe not due to his heart condition, there is nothing I can do.  I can't help him.  I can't change things.  We have bribed him in every way possible.

It is no doubt that since he found out about having his surgery his grades have slid.  He's been able to barely get that B average and slide in there, but now it's not even that.  It's not terribly lower, but lower.  I know he's scared.  He won't say it.  He won't admit it, but what teenager wouldn't be scared of something so big they've never encountered before?  I know some teenagers take this kind of life and flourish.  They don't let it get to them.  He's just not that kind of kid.  I don't think he really doesn't think he has to get good grades and do something with his life.  I think a part of him, right now is paralyzed with some fear.

I need to let go.  I need to let go of the hope of him becoming 'that' kid.....'that' student.  The one who doesn't let the disease get to them and no excuses.  He is scared, he does let it get to him and he just is who he is.  He's not going to suddenly pull his grades up and say "hey, I'm in charge of my future and I care".  There.  I said it.  I'm saying it and hoping I can let  it go.  I'm hoping I can quit trying to fix it.  Let him really fix it or......not fix it and fail on his own.  I will always love him.  I will always care, but I can't do it for him.  I've tried for years to help him.  It's time he does it for himself.  I don't want to ever be able to say I told you so.  I will always have hope that he will get it, but I can't dream about that anymore.  He is his own person.  After Saturday he will only have one more year until adulthood.  I can keep trying to help him and give him my pearls of wisdom when he'll hear it, but it is HIS life.

Different kinda night

I reluctantly let Cole go to work last night.  It was supposed to drop snow, ice or both at some point, but they couldn't seem to narrow it down at all.  Our weather forecasters this winter have not done a good job at all!

The girls, Jaemin and I watched the end of Thor and had some popcorn.  They definitely enjoyed!

I knew I wouldn't sleep well since Cole had to work past midnight.  I'm sorry, it's ridiculous that McDonalds lets almost children manage their restaurants without enough sense to send a 16 year old child home when ice and sleet set in.  He had our 4 wheel drive, but nothing fairs well on this stuff.

1am came and went and nothing.  He finally called and said he'd made the 10 minute drive in 40 minutes!  He said it was really, really bad.  Well, then he tried to back down the driveway and slid all the way down until our swingset, dog kennel and basketball goad stopped him.  The kennel is bent (Camo was in the house due to the cold) and he sheared the basketball pole clean off.  I think it scared the crap out of him.  He was crying.  I told him we didn't care about the pole or the dent it might have left in that almost 20 year old truck.  I was really thankful that he had made it home in one piece.

Needless to say, this morning we had a talk about just parking in the yard at the top of the hill, who cares about the yard.  We also told him that a stupid minimum wage McDonalds job is not worth his life and next time he has to tell them if it starts he has to leave.  His life doesn't depend on that money, but his life does depend on him making it home alive.  I told him after his surgery he needs to look for a job that isn't so stupid and immature and irresponsible to their employees.  Brian and I decided we need to get an estimate on some more concrete at the top so he has a place to park without worrying about him hitting the house or sliding into the woods on nights like these.  I'm tired of being up, worried for hours like last night.  Hopefully, it won't be terribly expensive, but we have to do something.  Chase will be driving in 2 more years and we'll have 2 of them to worry about.

God please keep my kids safe.  And please let adults who are responsible for them have a better head on their shoulders than these people have.

After some tears and anxiety we have the date set

He had picked the day a few days ago.  We worked with the 2 weeks in March the cardiac nurse gave to us.  I called and left her a voicemail, but she never called back.  So, then, I called and she said the doctor (there are two cardiac surgeons) she was planning on may be on Spring break that week.  Uhhhh....why did you give us the choice then?  She said she would call back later that day or the next day.  Me, thinking by the same time the next day was growing inpatient by Friday.  I had to leave work at 12:45 to get Jaemin to kindergarten screening by 1:30.  Needless to say, I knew I couldn't talk to her in the middle of his screening at the busy elementary school, so I called to ask before I left.  Well, the receptionist decided I really needed to be stressed out and she asked how she could help me.  When I let her know I just needed to find out if we were getting the date or not she told me the nurse was wrong and the doctor would not do his surgery that day.  I told her that that day worked out perfectly and I needed to know for sure before they moved it up an entire week and I only had 1 week to prepare, at home, work, etc. plus figure out what to do with the kids because Cole specifically picked a day the kids would have no school to work around.  She couldn't seem to understand what I could possibly need to do before his surgery with 5 kids to think about.

The nurse called shortly after and I explained to her that the weekend was here, we only had 2 weeks left to plan, I had almost no minutes left on my prepaid phone to keep calling to get this arranged and get my questions asked.  I explained that I just needed to know.  She was NOT very nice to me.  I won't go into exactly how she talked to me, but needless to say I ended the conversation with "I'm at work and can't deal with this right now, by the time you call this afternoon at home I will have talked to Cole and maybe we'll get a 2nd opinion at the neighboring children's hospital".  I was starting to cry from the frustration and stress and didn't want that at work.  She called back and left me a voicemail to apologize for how she spoke to me and said she would call after kindergarten screening.

I walked in the door after getting the kids, after screening, and one of the surgeons called.  He said he just wanted to make sure we weren't stressed about the date because the idea of this surgery is stressful enough on a family.  He assured me one of the two would be there that day and he would be set to have surgery.  He said in addition, to alleviate some financial stress (yep, the out of pocket max on our insurance is high deductible, so that is high too) by paying for our hospital night since we have to come the afternoon before to meet and run tests.  He said the nurse would be calling that night.

She called last night after we ran for groceries and apologized again.  She told me they knew their job and sometimes forget all of the planning a family has to do prior to surgery (especially for 7) and how stressful it is.  She told me they would get us the hotel room and maybe even a 2nd night so Brian wouldn't have to leave so late.  We're hoping to stay a 3rd night (on our own dime) so that if he gets moved to step-down by that Sunday the kids can see him before they leave.  They, more than likely, will not be allowed in ICU, so one of us will just keep them busy at the hotel until they can see him, unless they say it isn't going to happen.  I think it would make Chelsi and Jaemin feel better for sure.

The worst part will be 5-10 days of hospital food and the expense of it.  Luckily, she said they have a fridge and I can bring some snacks and food with me and I can get by on little.  He'll be well fed since he's the patient.  I felt so much better when she gave us the date for sure and we could move forward with the next step of planning.  With this kind of thing and this many people and a hospital far away, it takes a fair amount of planning in steps.  It's not like it's an outpatient surgery and he'll be out in a day or back to school in just a few days, this is 3 weeks away from work and school with the possibility of only returning part time until he gets his energy level and tolerance built back up.  I have no doubt he'll do well and luckily he's very strong and very healthy, but open heart surgery is tough on the body and stressful on a heart.

Soon enough, like all of the other things in our lives, we'll be able to look back and just smile at the memory of it.  And while he'll have a lifetime of these, the kids will be older and we'll be more seasoned at it as will he.  And, hopefully, there will be advances to lessen the number of open-heart surgeries and allow for some cath procedures here and there instead.

It's time, we've picked a date.

The Cardiac Coordinator called today.  She said we can pick any day.  Feels weird.  Well, today's  a good day to saw open my son's chest and play with the one thing keeping him alive.

She said there were no real, off-limits, days, so we decided Cole should decide.  We took the school schedule off the fridge and since they're off 1 1/2 days, after his birthday, next month, he decided he wanted it then.  It will be 1 1/2 less days of missed work.  It will also mean we can more easily take the other kids out of school to be there that day.  They will more than likely not be allowed to see him in the ICU since it will still be flu season.  She said they could come back when he's in the step-down unit, but that will be 2-3 days and it's a 2+ hour drive, so I doubt they will.

Now, I just have to wait for her to call me back tomorrow morning  to confirm.  We'll meet his surgeon the day before.  Don't think for a second I hadn't already done research on the two surgeons there.  He'll have blood tests, get xrays and sign some forms.  Then, we thought we could take the kids to a hotel (she says there are hospital discounts) for the night and they can swim before the stressful next day.  It will be good for Cole too.  Surgeries are at 7am except on Wednesdays, so it will be 7.  I'm dreading saying good bye to my sweet 5 year old for so long, but I know I need to be with Cole.  He will need me more.  Jaemin doesn't really need me and won't miss me half as much as I'll miss him.  Thank God for Skype!  I don't have many cell minutes since I'm on a prepaid plan, so that leaves my only real communication with Skype.  Not going to be easy for that long of a period, but it is what it is.  I'd like to up Cole's texts too, so he has something to do.

Hopefully, the pool table will delivered next week so he can do that.  With the snow in the forecast who knows.

I have 2 more weeks to tie things up at work before I'm gone for 3 weeks with Cole.  Just thinking about all this is so weird.  It's been 16 years of being told he will need a cath, then he'll need surgery, then he won't need surgery.  Then, we switched hospitals and were told he would definitely need surgery.  So thankful we switched 3 years ago.  They had never done an MRI and all tet  kids should have an MRI.  You cannot completely tell from an echo or EKG the true picture.  We would never had known without the MRI.  Dr. R said his heart function was still good but the dimension of his right ventricle had increased so much from 3 years ago and if he waited much longer he could lose function and you do NOT regain that.  Honestly, I think the other hospital would have killed him.   God tends to lead me the down the right path and even though I'm usually pretty scared and leery to go, I'm glad I do.

If you personally know us, we don't need a whole lot other than  prayers and maybe cards for Cole.

Lots to think about

Funny how you think you have your mind all made up and then in one instance, one experience can change it just like that.

We thought we had it all planned out, or pretty much anyways, what we were going to do with the kids and how we were going to handle the week of Cole's surgery.  I wanted it in my head so when they tell us what's going on this week or next  I was somewhat prepared so I could better process.  Then, my uncle was killed this week.  He was cutting a tree down and it fell on him.  He's the youngest child of my grandma's and is barely older than myself.  His kids are my kids' ages, I was in his wedding and babysat his oldest.  Because of family issues, my mom didn't quite make it to the hospital before he passed away.  It just broke my heart for her.  She is the oldest, he is the baby of the family.  I know how much he meant to her.  She couldn't be there to say goodbye to her baby brother.

I know, I really do, that Cole's surgery is going to be fine.  I know that it must be done in order for him to live.  But, it's his heart and kind of an important organ to his survival.  I was so set thinking the kids could just stay home that day since it's so far away from home.  They could stay in their routine and their aunt could stay with them until Brian leaves me at the hospital.  But, after this week, I'm doubting our plan.  What if anything happened?  Maybe they really should be there, just for that day, just in case?  Will they really focus on school that day not knowing if everything's okay with their big brother anyways?  It will be much harder to have them with us, but at the same time is it  really right for us to deny them of being with their family.  Really, this IS a big deal.

Another plan changed and unsure.  We're going to have a lot of questions for the doctor so we can figure out what to do.  I've been trying to chat with others at the support group, but it's been half one way and half the other.  We may lean to our family's old standby.  We'll call a family meeting, present the facts and see what the kids think.  See how they feel.  Cole will be out that day, so he won't even remember them stopping in, but it may make them feel better if they can just see him before they go home and then we can Skype the rest of the week.  I know Cole really can't wait until it's all over with and I'm completely with him on that.  I'm getting nervous about everything.  And I just want it to be over with so I can stop.  Stop worrying about the 4 younger kids, stop worrying about how to work things out and stop worrying about Cole being so scared and being completely helpless in it.  It really SUCKS being so helpless watching your child go through this.  I can't imagine how a cancer mom feels.  Kids should NOT be born with diseases and that's that.

The waiting game

We went to the hospital (a 2+ hour drive) to have Cole's cardiac MRI/MRA done.  They were running an hour late, so it made the day even longer.  We didn't get home until 6:30 and both of us were just tired from the driving and sitting and waiting.  The radiologist said they got good images and he was beginning to circle and calculate.  Now, we just wait for them to give those numbers to the cardiologist and then the team will get together and decide how to proceed.  Cole said he hopes it's awhile until he needs another one.  2+ hours in that machine and lying still and taking your breathes is kind of tiring and SO not fun.

Now, I'm wondering what Cole will decide if he gets choices.  He said he wanted to do it as soon as school was out this year, if possible.  He really doesn't want it during his senior year and since he's taking a couple of college classes I would agree that it's not a good idea.  I reminded him that if he did it after school wrestling would for sure be out.  He said he was so mad at the coach for how he treated him that he didn't care.  I tried to remind him that he would only be punishing himself, not the coach.  Those kinds of coaches do not care about their athletes, only themselves.  I told him even if he changed his mind come fall he wouldn't be able to so by doing that he'd be making the choice already.  Then he said he didn't want teachers coming over.  I think there's probably more to his worries and concerns, but he's just not sharing them right now.  He's like me.  He needed to hear the information, but now he needs time to let it sink in and him to just think about it.

Now, if my mother in law would just leave me alone.  I know she's just trying to make sure we know she cares, but WE KNOW.  Trust me.  Asking constantly if we know anything and acting like we're hiding anything is just pushing us away and making us not want to talk.  We've both told her multiple times that it would be at least a week or two after his MRI until we knew anything and we would let her know then.  Just let got and trust us and remember he's our child!  We've had this fight before.  First we will deal with everything on our side and get things figured out for this family of 7, then we will tell people who's doing what and when things will take place.  Wait until we let you know, please!

All things must come to an end

Everything, good or bad, must end at some point.

I realize that after Jaemin came home I was consumed with helping him adjust because it was rough to say the very least.  He's one of the worst case scenarios in adoption adjustment, but we're getting through and I love the kid.  But, it was by this time that all these girls just left me.  Left me when I probably needed to talk the most.  Luckily, I had online adoption friends who got it.  I've grown and changed and I guess I outgrew them or they undergrew me...I don't know.  Somehow, it's just done and over and they began to choose it and I am finally accepting it.  I really wish it didn't have to end like this, but it really does affect me in other ways to be as hurt as they made me feel and I don't want that anymore.  Place in my life's book closed.

Cole's wrestling has also come to an end.  Today was it.  He ended his very last match with a win.  JV, but glad to see it.  No matter how many wins some of these boys have, not matter how tough they look and act, I know it's my kid who is the toughest, no matter how many losses.  He's out there with his heart, pushing past most broken hearts' limits.  Doing something some heart kids only dream of.  I hope he gets his surgery so next year he can really see what he's capable of and realize just how good regular people feel because they're heart isn't so tired!  I'm so proud of this kid no matter what!

And, while I was at the tournament, Brian called to let me know Jynx died.  We don't know why or how, he said he laid his head on Chase's tackle box and died.  He loved Chase so much and Chase was his person for sure.  We had been keeping him in for the cold and Brian said he whined to be let out and we then we made him come back in.  We wonder if he knew and didn't want to die in the house.  We kinda knew something was coming, but I think Chase is still pretty sad and Camo for sure is going to mourn since Shot Gun disappeared he has no brothers left.

your kids grow up

whether you want them to or not and it IS hard.

Luckily, both of our older boys have been too shy to ask girls out, so no girlfriends yet.  Cole has become friends with a coworker that he's begun texting constantly.   I had to remind him if he kept it up he'd run out of texts for the month before the plan renewed (GoPhone).  He said she keeps texting and he has to answer.  I asked what they say to each other and he said she just texts to say 'hey'.  Oh sheesh.  I informed him he does not have to text back when that's all she saying.  Definitely not during school.  It can wait until after school and after practice.  I told him if he likes her so much he should ask her out already.  He said he didn't want to.  He said she changes boyfriends too many times.  Smart boy!  That talk alone made me feel better about his common sense.   She may be a really nice girl, but at least he knows enough not to knowingly get his heart broken.

The texting has slowed WAY down.  They still text each other, but on a better level. With all these gadgets out there nowadays, it's much harder for parents to keep up with kids.  They can say and do so much with these things.  I keep hoping that as long as we keep their user ids and passwords and occasionally check until we trust them it will be okay.  But, what I realized so far is that watching your boy talk to a girl really brings out the mom in you.  I told him that in no way will any girl  be good enough for my son, but I will always do my best to make anyone feel welcome if he finds her to be good.

Teens in general do require different parenting.  While I tell Kaelin that I'm not okay with the yoga pants wearing girls who don't cover their rears (tiny girl or not) I'm trying to pick my battles.  Like lately, I don't care for what she does with her hair.  But, I don't know the teenage styles and I'm not going to make her feel  bad about herself when she really did spend time putting it that way.   She tries to be a good girl, so that's more important.

There are million battles you could pick with 3 teens, daily.  But I'm learning everyday to bite my tongue more and more and only talk about the important things.  I incorporate some of the tactics my mom used or tweak those tactics or come up with new ones, but I keep trying find my way through this maze of momhood.

Trying to enjoy all of the little things.

Really just trying to sit back and enjoy.  Trying not to get upset over stupid trivial things.

Here is Jaemin actually coloring.  He absolutely hates coloring.  It's part of his sensory disorder.  It's just torture, so we've been doing everything to get him to half-way enjoy it to the point he'll get through school.

Cole had a rough weekend wrestling at a pretty big tournament.  He lost all 4 matches and texted us (we couldn't go since it was 4 hours away) that he wanted to quit.  I figured he just needed to cool off, so Brian texted back to remind him that he's JV wrestling in a big Varsity tournament against state contenders with only 20 minutes between matches when you're supposed to have 45.  On top of that you have a heart condition.  He just refuses to let that be a reason for anything.  While I'm so glad he has never made excuses, sometimes you just need to say okay.  By the time he came home Saturday night we talked to him without bringing that text up and he seemed fine.  We decided not to talk about it and see if he went to practice today.  Sure enough he was back at practice.  Now, I'm praying he can place at the JV tournament.  Not for me, the team or anyone else but himself.  Just to show himself he is special and he can do it.

Chase is finally enjoying the beginning of high school football.  Yes, the 8th graders start working out with the coach this early.  They ended up calling off school tomorrow for the expected snow and he came up all bummed he was going to miss weight lifting.  Well, that's a new Chase.  Good to meet him.  I don't need him to be the best, but to put his best out there.  That's all we want from any of them.

Chelsi is all signed up for gymnastics and is wanting to do it more often after seeing the Gabby Douglas story.  She's so ready to go, but she doesn't realize she's only in tumbling.  We could never afford full on gymnastics.  It's over $100/month!

Kaelin is playing on her first modified league for volleyball.  They won't be good, but it will good for them to play good teams and she'll have fun with her friends.  Her coach from last year volunteered again and she's been trying to get that overhand serve down all Winter.  Hopefully, she'll get SOME over the net.  :)

As Cole gets closer and closer to 17 and I realize he'll soon be 18, I'm realizing the short time we have left with each of them and I want to squeeze in more talks, more cuddle time, more movie nights.  I LOVE sitting and hearing about Cole's  night in a hotel with 2 other wrestlers and the jokes they play on each other.  The sense of humors these boys have and the good stuff being part of a team brings out in Cole.  I love seeing him happy and finding a place.  I pray everyday he continues to figure things out.  I know he doesn't want mom and dad telling him what to do anymore and deep in my heart I know he knows what's good and right, I just hope he finds some good honest thing to do in his life to pay his bills and be happy.

I love these kids so much.  And they really are good kids.

Dear Tooth Fairy...

Okay, so let me start this by saying that the Tooth Fairy does a really poor job of collecting teeth around here.  She's rarely timely and the only thing she is consistent about is being late.  I would fire her if I were her boss.  Really awful at her job......really!

Poor Chelsi lost her tooth a week or so ago and waited as patiently as she could for the Tooth Fairy to arrive.  When she didn't come.....well.....you'll have to read about Chelsi's unfortunate luck of dropping her tooth.

She even dated it and put her name and address on it.  She's a very formal 8 year old, I must say.  In case you can't read it because I had to take the picture with the phone it says:

Dear Tooth Fairy,
I lost a tooth a day before yesterday.  I was excited that it had fallen out.  Then today I went to my window sill to see if you came yet.  You didn't.  I picked up my tooth and dropped it in my vent below my window sill.  Could you still give me money.
Thank you.
Love,
Chelsi

First, is that not sweet?  Second , could you hear the disappointment in her words when she said "you didn't"?  And if only we'd had a camera when we found out about the note.  Brian happened to ask about her tooth and she just casually says the tooth fairy hasn't come, but she left her a note.  Brian had to read it.  Brian, Kaelin and I were laughing  SO hard reading it.  We didn't even notice she left the room.  I found her  a few minutes later and she was in her room crying.  I asked her what was wrong and she said it upset her that we were laughing.  I told her she'd appreciate it down the road and she said "well you didn't have to get all up in my business".  Where the heck did she get that??

Needless to say the tooth fairy came that night and wrote a note back to her to apologize for being so busy.  She was super excited about the note and that she finally came.

All that for one quarter!!!!!!!!!!!

This week....

I feel like I should be typing with pauses kinda like my internet does.  We have the slowest internet.  Sure we could pay a fortune and upgrade, but we pay is too high as it is.  So I'm stuck with a lot of reload errors.....constantly!  Good thing we don't have streaming tv, you'd constantly be in a commercial break due to the streaming pauses.  Highly annoying.  I still think 7 on one router just overloads sometimes, but then again, Brian and I are the only ones up right now, so I don't think it's that.

We have survived the first week of 6:30 am weight lifting for Chase.  He enjoys being with his friends and really only has to get up a few minutes earlier to catch a ride with his dad to school.  He gets to skip breakfast, so that saves time and then he eats granola after lifting.

Wrestling is winding down.  We're down to 1 or 2 per week and he may not even wrestle this weekend, he's just waiting to find out.  Hard when the coaches son is the one in your weight class and there's always a 'reason' not to have wrestle offs.  I think it's because Cole could beat him. He did finally lose a match this week though.

Finally decided to spend the money to get my iPod fixed.  It wasn't doing any good just holding onto it, so this guy said he would do it for $50 which is actually pretty cheap around here.  Picking it up tomorrow night and we're going to give it to Chelsi.  She's so excited to have a 4g!  She'll finally be able to get all the apps to work and we're going to give Jaemin Chelsi's pink iPod.  He's so stinkin' excited pink or not.  He can finally watch all of the versions of "What does the fox say" whenever he wants.  He's been at the mercy of his siblings.  More loud singing from Jaemin coming.  One of these I will record him singing and post on Youtube!

I gave the girls haircuts this week and Brian did NOT like them.  He was fine with Kaelins.  I really just trimmed it so she could still get it up for volleyball.  Chelsi's I cut shoulder length and layered and she looks all grown up.  He said he didn't like it and then he said 'she's gorgeous'.  She is!

And....YAY!.......the furniture store called and said our furniture in.  We will be able to really fit at the table, all 7 of us together.  Kaelin won't be squashed and sandwiched so close between Jaemin and Chelsi.  Maybe Brian will be able to sleep on our new mattress....maybe his back won't hurt.  I just pray the kitchen set fits in our tiny kitchen and it all works.  I have wanted this for so long!

I just pray life keeps going on like this.....I'm enjoying it.

Looking forward, looking back

While I love today and what it brings like a sweet little five year old who can break in with "I love you" to divert your attention from getting onto him.  I sort of look forward to years down the road when I see them all grown up and I have the water to just the two of us instead of sharing the pressure because the washing machine, dishwasher or another shower is constantly running in this family of 7.  I look forward to always having hot water when I take a shower, with pressure.  I look forward to not worrying about who's watching who while we run and get things done.  I'm not  sure I'll really have that empty nest syndrome a lot of older couples do.

But, I know to love where we're at.  Though in the tough times, not so much.  I look forward to skipping forward a few days to get through whatever it  is, or sometimes months.  I am trying to just enjoy the day, the time we're in.  Trying to enjoy each of their stages and changes.  It's kind of neat with a family this big.  You get to see the changes an almost 17 year old goes through as he approaches being an adult in one year.  Wow, I will have an adult child in one year!  You get to see the changes a 13 year old goes through as he really enters puberty and the teen years.  You get to see the scary changes an 11 year old goes through as she blossoms into a really beautiful young lady.  You get to see the innocence and fun an 8 year old still has and the little girl your 11 year old used to be.  And all while that is ALL going on at the same exact moment, you get to see a sweet little 5 year old boy just be ALL boy and so young and so sweet and just starting life as he gets ready to enter the real world school holds.

Try to enjoy every step of the way. That's my lifelong goal......and as I write that and say that my 16 year old is out with friends and I'm hoping what we've taught him and what he knows stays with him every second he's away from us and he makes good decisions.  So yes, while I enjoy it and try really hard to enjoy every second I'm scared to death at moments with worry of what I know other kids do hoping mine won't.   The joys of parenting come with a lot of worries.  But, I guess, nothing great is without risk.

No better compliment

than to hear an older mother (mom older than you and with grown kids) tell you you're doing a great job of raising your kids and how genuinely she can tell I love them and that she loves our family.  Now, my family does not know her, but I work with her.  Today was her last day and though we rarely talked I would talk about the kids from time-to-time.  I told her we were going to miss her at work and she hugged me and told me that because of the way I spoke about my kids she could tell how deeply I loved them and that our family will always be in her heart and prayers.  So sweet!  I will miss J.

Good Lens

Great subject.

I finally got to use the lens I bought last year for the purpose I bought it  for anyways.  I wanted to check it out on indoor sports pictures.  Specifically, Cole's wrestling.

He pinned the kid and did great.  It's amazing that this is only his 3rd year wrestling ever and has a heart condition.  He really does do well.  I know a lot of parents think a junior in high school isn't very good if they're on JV, but I think it's great.  Most of these kids have been wrestling for 3-5 years by the time they're freshman and that was his first year.  He's winning every JV match and has really improved.  I'm very proud of how strong he is and I mean that in more than one way.

I'm telling you

growing up IS hard!  Raising kids who are trying to grow up is REALLY hard.

We've had a couple things slam us this week with kids.  One was just something that is fairly common with teens, but I promised I wouldn't share with anyone, so I have to keep my promise.  The the kid asked to go to a cousin's house for a bonfire.  All sounds fine, but I know this cousin is 21+ and likes his alcohol.  This is not something, whether you trust your teenager or not, your teenager needs to be around with no responsible adults there.  We talked to a cop friend about MIPs and know as long as he does nothing all is well, but the longer we can keep him unexposed the better.  We asked where all his friends were and he said some were over at another friend's hanging out.  We had to switch gears because we've always taught the kids not to invite themselves over.  We told him at this age you have to speak up or you can get left behind and if you want to hangout it's okay.  He's never really gone out, so he has to let them know he's allowed to.  He texted them and then went over.  By 10pm I had a phone call that they were playing pool and wanted to spend the night.  Deal was he had to be home by 8am to do chores and he had to work tonight.

He said they stayed up to 3am (typical) and was really tired.  We told him just to take a shower, do his chores and take a nap.  I think he was feeling better after that. Some kids do really well at this point, but other have a harder time finding their  place.  I can see a lot of me in him too.  I'm always afraid of  overstepping and asking to hangout thinking someone will feel the need to say yes when they really want to say no.  I'm almost 40 and still feel that way.  The friend thing doesn't exactly get easier as you get older with this sort of personality complex.  I guess we're both just too unsure of ourselves.  I wish we were more confident people.  It would  do both of us a lot of good.

For now, I'm just happy that though he wasn't happy with me for not letting him go to the bonfire, I explained why and came up with the solution of him going with his friends, he talked calmly with me about it.  It's nice to see these moments when he can sit to find the way through or around something instead of just assuming it's a barricade and nothing can be done but get angry.  He seems to do well if you can just get him to talk.  I don't think that's always or often that easy with teenager boys.

I think the one thing for parents of teenagers to keep in mind, now remember there's  always the exception, is  to keep the line of communication open.  Tell them exactly what you expect and what the consequences are and follow through on them.  Sort of like a younger child. Then, with each day, week, month and year that you get through, count your blessings and consider the accomplishments.

And deep down when I see the behavior of other kids I realize I have some pretty good kids.

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!