Monday, February 28, 2011

Praise God!
















Cole's cardiologist called and told us about the MRI last week.  He said he saw nothing he wasn't expecting.  I asked him, point blank, if we should discontinue planning our trip to Korea in 2013 and he said keep planning it.  He thought that when he sees him next year he'll know he'll either have to do it then or it may even wait until after the trip.  Now he's saying he may be able to wait until after the trip.  He said definitely no more than a few years, but maybe more than a couple.  He said 11 minutes on the treadmill was great, so we're happy!

Sunday, February 27, 2011

Our living quarters and storage

Here's our real kitchen.  We can still get to it, but you have to go outside and through the garage.  We won't be having suppers here, but at least if we must have something we can get to it.
Two bathrooms (and our closet, but you can't see it)
Here's our pillows and lovees.
Station to get ready in the morning (for us girls anyways).
Our kitchen and medicine area.
Sleeping.
All mushed together.

Testing, testing

our patience with each other that is.  The big boys are lucky.  They have a bedroom in the basement.  No major change for them.  But, the other 5 of us have moved downstairs into the basement to live for a little over a week.  Where's the little icon with the buggy eyed guy? 

We have STUFFED all of the furniture from the 3 bedrooms, living room and hallway into the 2 bathrooms and kitchen...and one thing in the laundry.  I think we can still get to our kitchen if we must, to get meds and such.  I did pack us a small kitchen for the basement though.  We have ibuprofen, tylenol and all daily meds.  7 cups with names on the bottom and a towel.  As well as granola bars and breakfast bars for breakfasts at home.  The other days we'll be, um, mooching!  I put aside a small budget for some sub sandwiches we can eat at home and then we asked the parents if we can come over to eat on certain nights while we do laundry.  And the bathroom, right now, is the ONLY thing that worries me.  Our basement bathroom is SMALL.  Luckily it does have a small shower too, so we can still bathe.  That's good, huh? 

So what's going on upstairs?  Hardwood.  Yep, finally we have enough to hardwood everything that's not tile or linoleum.  I'm really hoping Jaemin, Chase and my own allergies will be better after this.  We're hoping the dust will be less too, therefore creating less allergies for me.  I HATE having my house torn apart like this.  And the work poor Brian is going to have to do getting the trim back on and fixing the wainscot he put up 3 years ago because some of what we did won't fit with the hardwoods.  I know I'll LOVE the end result and be happy with less dirt, but just gotta get through this week of very low maintenance me.  I'm pretty low maintenance anyways, but I won't be fixing my hair a whole lot for sure.  So beware when you see me.  It won't be pretty....at all!

I'll take a picture when I have time...I'm sure there will be some time for that.  It's an interesting set up for sure.  Jaemin at least has his swing screwed to the floor to entertain him some...and God help us help him go to sleep.  He does NOT sleep well in places that don't belong to him.

Tuesday, February 22, 2011

Two days of doctors down

Cole is done with his workup.  Very painless and all done.  Results of the EKG and echo were no different than in July, which was expected.  We'll have MRI results and dilation of his right ventricle later in the week or early next week.  Still unsure if he'll have a good idea of when surgery will be off of that.  Not sure if we should plan to go to Korea anymore or not.  But, Cole and I had a nice day together.  Nothing says love like spending 11 hours with you mom.  We talked a lot and it was nice!

I spent today trying to get Jaemin's autism evaluation set up.  While I'm not completely convinced of it, the ped says he has enough symptoms to be concerned and he may just be very low on the spectrum...meaning very high functioning.  While we wait for his April evaluation we're trying some changes to his acid reflux med and giving him yogurt to make sure it's not a yeast sensitivity.  I feel like we have to do something in the next two months.  May as well.

I've been watching both of my boys so much more intently lately.  I'm waiting for Cole to suddenly go off, so to speak.  I mean when's he going to suddenly start having symptoms?  Is it going to be sudden like when he was an infant, or am I going to get some notice on surgery this time?  I have no idea what to expect and that's the part that scares me the most.  Jaemin, I just watch for anything he does that keeps him off the spectrum.  Cheering at anything he does...even though mostly he neurologically typical.  I find myself holding Jaemin more and seeing just how intense my love is for him and how lucky we are to have this little angel in our lives no matter what happens.

I'm the luckiest mom in the world!

Sunday, February 20, 2011

Too many irons in the fire?
















Just a saying, but I think that's where we are right now.  Unfortunately, with 5 kids, there's no good time for anything.  You just let life take you where it does and you try to respond rather than react.

We're coming off the 2nd week of Chelsi's play.  This weekend is it and we're DONE!  While I think she will miss seeing her castmates, we both very much need a break.  Too many late nights is doing me in and for sure her.  She acts like a diva and it's mostly lack of sleep.

Tomorrow, Cole has his big heart work up.  We'll spend all day at the hospital so he can get an EKG, echo, MRI and stress test.  Then, hopefully, in a few days they'll have a better idea of when his heart surgery will be.  I'm hoping for something, so we're out of this lost area I feel right now.  I know it's not a perfect science, but at some point they'll have to make the decision to do it before he has permanent damage to the right side.  It's a personal call in ways, but they will make it as a group of cardiologists in the practice and they have a formula they calculate off the MRI.  Forgive me because I don't explain things well.  This is all new to me since the previous doctor never ordered these tests and should have been so they could have been watching the progress of his leakage.

Next week....oh next week.  I'm dreading.  We're getting some hardwood done, so we have to move around furniture.  We just finished painting the girls room, which made them very happy.  It's the first time it's been painted in 11 years and was painted for Chase while I was pregnant with him.  They picked an orange color that's sort of like canteloupe.  Then, Kaelin picked out black and white rugs for the floor.  Right now their bunk beds and all their belongings are piled up in my bathroom on top of the tub.  I knew that large tub would some day be handy!  :)

I also have a quick procedure next week.  No anesthesia, just a local, but I'm not looking forward to it since the lump is fairly large.  A friend was diagnosed with breast cancer recently and after B talked to her about it she has been given the sebaceous cyst diagnosis first too.  I don't know when hers grew or how long it was there before she was biopsied and haven't had time to talk to her, but B wants it out right away, so I made the appointment with the surgeon I saw last year.  Remember the cyst, no it's an adenoma, no it's a cyst?  So, while it hasn't grown since they've been watching it for the last 1 1/2 years I'm going to have it removed.  It's probably been there for 3 years or pretty close to.  I guess at some point it grew, huh?

Then, after all that's over we can have our furniture back in place and resume living, right?  I'm always a little leary when we do something to the house of any substance or go on vacation.  We don't have the greatest track record.  The last house work incurred Brian a spinal cord injury the day after we committed and started and the last vacation ended up with Cole having an appendectomy 4 days prior and Chelsi a febrile seizure on the interstate in another state.  Those memories flood through my head and though I try to shove them out I can't help but be a little gun shy that it could recur.  Cole has a BAD habit of having surgeries on people's birthdays, so this heart work up worries me a bit.  He had his appy on Chase's birthday and his heart surgery on his dad's birthday.  Obviously not planned!

But, as I tell others who get worried or stressed about things, just try to breath and live your life.  Nothing's going to change what's going to happen!

Tuesday, February 15, 2011

Bullying's Normal

Did you know that?  I mean, yes, bullying has gone on for centuries and is a form of hazing, but isn't that what all the commercials are about nowadays.  I thought I'd seen Obama and other advocates on special service announcements talking about bullying being a problem and having no tolerance for it?  Oh wait....maybe they're only concerned if it's cyber bullying.  Yep, that must be it, because when now that my kid is getting bullied by the same kid it's 'normal'.  But, it's in-person bullying...not cyber.  So, this must be an out for a school, huh?  A kid can laugh at another kid for having a heart condition that keeps him from playing football and being 'cool' ( I use that loosely since no kid that acts like this is every going to be cool) or harassing a kid and pushing him until they say something hurtful to another kid....no that must not be bullying either.  Not according to our school.  Not one thing I could say deserved any time.  All I got was how normal this was and how many new students there were this year and how that's just going to cause some 'upheaval'.  Upheaval....that's what we call it?  My kid could care less about who this new kid is friends with ......they have no right picking on him because he's smaller and is being intimidated.  All I asked was for an 'out' for him so he could get out of the situation, if needed, and I couldn't even get that. 

No school has the right to make excuses like this.  They're lucky, for now, he's asked that we not do anything to the bullier and I made him allow me to ask them to put it in his record in case it continues.  But, if it does continue and they do nothing there will have to be consequences.  Sometimes the only thing you can do is call the Board of Education.  If I have to I will, so I hop the kid leaves my child alone!

Friday, February 11, 2011

See My Korea Trip Page

Slowly, but surely we're making progress on saving for our trip.  Another $100 coming soon