Tuesday, December 27, 2011

I don't say too much about my reactive airway or asthma....whatever you care to call it.  For almost 20 years I've been trying to manage.  For 8-10 years I did allergy shots with one doc and then quit when it wasn't doing anything.  I gave it a long try, don't you think?  Then, I woke up holding my breath at night...scared the bejezious out of me.  He said I didn't fit the profile for sleep apnea, so he swore (this new allergy doc) that he could help me.  So, for 3 years I did them with him.  I'm just not seeing a big change.  As much as I want to, I can't say I did.  I was still on daily meds.  At one point I was doing flonase, allegra and singulair daily.  Didn't really notice a difference.  I still had to use my albuterol several times a week because of the panicky feeling I'd get when I couldn't catch a deep breath...or sometimes just a breath.  Talk about being a big grouch.  It's hard NOT to be really edgy when you can't breath all day long!

So when the Advair was working I thought I had it made.  Nope...dang Advair made me have more problems...giving me lovely pneumonia and losing my voice.  Not to mention all the weight gain corticosteroids cause.  I went to our health foods store a couple of weeks ago to get some local honey as a last ditch effort and he recommended trying an MD he knows that now specializes in alternative therapy for allergies and asthma.  He went to training in eastern medicine.  So, I'm going there in 2 weeks.  I guess I'm just hoping he can give me some advice on some natural remedies I can take to come close to the Advair without the other side effects.  I did try the honey with cinnamon tonight and I'll keep trying that to see if it helps.  I've been researching and found vitamin C, quercetin and bromelain are supposed to help some with asthma as natural anti-histamines and anti inflammatories.  Apparently, you're not supposed to take NSAIDS when you have asthma, so I wonder if my naproxen is what really set it off worse today?  I was kind of having a 2 puff (inhalder) day anyways, but then I had to take one of those for something else.  I rarely take them, so I'll have to pay attention to what kind of affect it has next time.  All I know is that just walking into the house I was puffing so hard and could not catch my breath tonight.  It scares me and agitates me all at the same time. 

I think I just needed to vent and I'm so hoping this new guy can do something for me.  I'm losing hope in so many doctors after the last guy wanted me to do all these expensive tests as to why I was losing my voice without even realizing it was the Advair he put me on the whole time.  2 weeks off and poof, my voice is fine.  I'm just sitting here, slowly breathing as much air as I can get in, trying to get over a very light cold that is totally adding to the problem and praying that tomorrow is better and that, honestly, 2012 is better.  As much as I'm happy most of the time, when I'm having these severe attacks, I can just sit here and cry because it feels like it will never get better and I wonder what it's like to breath normal.  I want to breath and not think about breathing.  I want it to be an automatic response instead of one I have to concentrate so hard to do.  Please, 2012, bring me an answer to my asthma.

Sunday, December 25, 2011

Such a nice day for a quiet Christmas



















We had our quiet Christmas for the first time and it was different, but nice.  We had breakfast at Brian's mom and dads and then came home.  Jae finally took his nap and while he did that Cole, Chase, Kaelin and I played Monopoly that they got for Christmas.  Then we started snacking on our unhealthy holiday snackfeast.  We had so much junk food, but the kids enjoyed it.  Then, since grandma went to New York to see Brandon, grandpa came and spent the evening with us, snacking some more and playing Catch Phrase.  Kaelin is HILARIOUS playing this game.  I wish I would have video taped that, but dang she was also pretty good at it even if she didn't know what something was.

Jaemin got a battery powered 4 wheeler as his gift for Christmas.  I almost forgot about it....how could I it was pretty much the only thing he got and the big thing was blocking us from getting in our closet for a week.  We let him try it out, in the dark, at 8 pm last night.  He and I had to stay home from Brian's grandparents because Jaemin has had a cold for about a week and started running a fever last night.  We didn't want to get anyone sick, so he and I got him a Happy Meal with Alvin (the Chipmunks) in it.  He LOVED Alvin and the lady at McDonalds was nice to enough to hunt it down for me so he could be happy on Christmas Eve.  We actually just watched Pollyanna together and then started the Sound of Music.  So, back to the 4 wheeler.  Because Jaemin didn't get to go bye-bye with the other kids we decided to let him go outside to ride his 4 wheeler (motorcycle he calls it) before he went to bed.  Oh my.  I've never seen any kid SO happy let alone my little sweet pea Jaemin.  He never stopped smiling in the 20 minutes we were outside.  He would stand as he rode and yell "WWWEEEEEEE".  He was dangerous on that thing and we have to keep a super close eye on him until he learns to steer better, but wow was he a happy boy!

All of the kids got so many things between us, Santa and some of the grandparents so far.  They all had a great Christmas and it was nice to have it be a little different and less rushed, once.  I will never get Jaemin's face out of my mind from last night.  Oh, if I could have video taped him sweet face in the dark I would have; pure happiness!

The picture from today's 4 wheeler ride aren't near the same smile we got last night, but it's still so cute to see him getting around on that thing.  Oh yeah, those cute little animal sleeps masks were Kaelin's favorite gift....go figure.  And Chelsi and Kaelin are now convinced Santa exists because who else would know Chelsi's Korean name was JiYoung and put it on her doll's dress?


And dad snuck in a Christmas kiss on Jaemin's cheek.

What a blast that 4 wheelers was. 



Friday, December 23, 2011

Inspiring

We sat down to tonight for family night. We kind of let these nights fall by the way side when the days are longer and nicer, but in the Winter we tend to have them more often. So, since I got a McDonald's gift card for Christmas, at work, I picked some up for everyone tonight and we sat on the floor in the living room for a picnic and watched a movie. Jaemin actually sat still with me the whole time. Of course, during part of it I did his brushing therapy and that always keeps him calm, but it counts the same.

Anyways, I had DVR'd Soul Surfer a couple of weeks ago and we hadn't had a chance to watch it yet. It was so amazing. I had tears through most of it. As a mother and just as a human this girl, Bethany Hamilton, is just amazing, mature, inspiring and beautiful. I don't mean beautiful as in pretty (which she's that too), but a beautiful personality.

I would be so blessed and proud if any of my kids carried the same pride, modesty, faith, strength and belief that this girl did in the face of adversity. I'm sure they didn't show just how hard her worst days really were, but everyone's entitled to their worst days....it's how you react and I can honestly say I wouldn't be proud of myself most times...more than likely. Everyone could learn from a person like her.

It was such a nice calming way to spend the eve of Christmas Eve. And as we plan for tomorrow I feel happy. Seeing movies like that put your life in perspective which is another lesson she learned and taught in the movie. So, tomorrow morning I will go for my eye visit, finish up a few groceries and come back and get all the kids ready to go to Brian's grandparents for Christmas. We will eat and talk and then go to church. I LOVE Christmas Eve mass. It's so relaxing, beautiful and just calming. It's always my favorite. Brian talked about going on Christmas Day, but I grew up on Christmas Eve mass and there's just nothing that compares to the beautifulness of the night with Christmas music and the kids dressed up so pretty and handsome.

To my family, missing this weekend in NY, I hope the 4 of you have a wonderful Christmas too and I will call you this weekend or Skype so I can see my sweet nephew on Christmas. To my dad in FL, I will call you tonight. You can finally open the Christmas present the 3 of us kids sent to you.

Goodnight all and blessings to everyone or at least the ability to count your blessings afforded to you all year long.


Wednesday, December 21, 2011

Rumble Ramble



















It's been awhile...again.  I say that A LOT!  It's just so busy and this isn't the place I think of, but I think of it while I'm driving.  Oh, I need to write this or that down.  And by the time I get a chance it's gone!

So, Cole is still wrestling.  As long as he finishes the season his coach told him he already has enough points to get a varsity letter.  I'm SO excited for him.  This means that even if he has his heart surgery and never get the chance again he'll still get to be like the other boys.  I told him if his grades stay up even after wrestling and the beginning of next year we will get him a letter jacket before Christmas.  I know this is a big expense for us, but I will find a way to do it for him because he rarely gets some of life's luxuries other kids get.  I want to spoil him just once.

Jaemin had his occupational therapy evaluation and she agrees that he seems to have sensory disorder.  He won't qualify for help through the school unless he has a deficit somewhere else and he does in speech, so they've tested him there too.  Poor guy has had two days in a row of testing and questions...mom too.  The speech therapist said she'll finish up everything sometime next month.  The OT thought there was a good chance they could squeak him in on speech and get him qualified for OT that way.  It's the first time I was validated by any professional and I was so happy.  So she taught me a brushing technique that we can try with him to alert his senses and the theory is that he will eventually not have to stim (stimulate) himself through flapping, running, etc. to soothe his senses.  Neurologically normal kids wouldn't care for it because it can sort of hurt, but he likes it.  It feels good.  We just started it yesterday, so it's hard to say. Probably just coincidence, but for the first time he didn't get upset when I wasn't home at bedtime and he went to bed for Brian before I came home from Cole's match.  He slept all night in his bed without even trying to come in my room.  Hopefully, eventually we'll see differences.  Someone I know said her daughter was in therapy for a couple of years and she saw drastic changes.  The OT thinks he will most definitely benefit and she said she was happy I pushed for the last 1 1/2 years to get someone to take me seriously.  He's such a smart boy.  He's just stuck inside himself sometimes because he can't quite get it out with what all's going on.  The quieter, sometimes the harder it can be for him.

Nothin' new for the other 3.  I had a $100 reward check from a policy I have, so instead of saving it this time I decided to splurge and we took some of it and went out to eat....on a week night.  The kids (or us for that matter) never get to do something this...ever.  It was a nice change.  We just talked and had fun.

Had a talk with Cole last night to make sure he knew  how proud I was of him.  Not because I think sports are important but because he was brave enough to try something he'd never done, not knowing how he'd do and really stuck it out there.  I told him he's the toughest boy on the team and I mean that.  How many kids are lining up for their next heart surgery and do this?  I can't wait to see him more and more because he gets better at each one.  Win or lose you can see a difference.

I can't believe it's almost Christmas.  I'm a little sad because it will be SO different.  I'm not sure I've ever spent a Christmas Day without my family...(mom, sister, etc.).  But, it was canceled because it's usually at mom's and she and Megan decided to fly to New York to see Brandon and Ethan.  I'd have gone if I didn't have a little boy that's fairly dependent on me.  Brandon deserves to have family too and in his situation he can't just fly back.  It's a compromise for everyone and family does that when they care.  We're going to make the best of it though.  I've bought enough junk food to make us sick.  We're going to (all 7 of us) play games that we get for Christmas and watch the Christmas movies I've been taping all day long.  We can eat wings, jalapeno poppers, little smokies and my must have cheesecake.  Oh and Kaelin requested fruit salad, so that's the only thing I have to really make.  I'm hoping we'll all have a good time just being together.  That's always good for a family, though we are probably together more than most, nowadays.

All is good for the most part and I'm just excited for the kids to have their Christmas now.  We don't buy anything for each other, so we can spend it on them, but I don't care.  I LOVE watching them open their presents.  They're the best kids in the world and really do appreciate the small things in life.

Sunday, December 11, 2011

Love unconditionally and often.


















Not that I don't already know it, but sometimes it just doesn't hurt to remind any one of us how important it is to love our children and families, hold them close to our hearts and enjoy every moment with them.  I think the times I, personally, need the reminders is when I'm upset with the kids over the small stuff like their constant fighting, their grades, etc.  I need to remember that you just don't know and to let the bad moments pass and love every moment with them.  It's the whole reason I pushed so hard for the cardiologist to let Cole wrestle when he didn't want to.  I decided it was time to let Cole live his life.  Enjoy his life.  What if it's gone tomorrow?  I'd want to know that he was happy.  And right now, while he's wrestling he seems so happy.  In fact, this is the happiest I've seen him since he was little.  It makes me feel so good to see him look happier.  Not that he was depressed or sad all the time.  I just don't know how to describe the difference I see.  Maybe to most people it's subtle, but to me....I see it.  I see his sense of belonging and accomplishment.  It's for him.

If you ever get the chance to watch "The Heart of Christmas" do.  It's so sad, but such a beautiful message that all parents and families should see.  You forget that there are so many families (mothers) going through such awful tough, draining, emotional times while you're complaining about something meaningless.  I'm as guilty as anyone.  I will try to do better.  But, read her caringbridge site for her son.  Watch the movie and then donate to the Dax Foundation.  They are trying to raise money for St. Judes and they have a goal of about 1 1/2 million dollars which is what's needed to run that hospital for just one day.

Enjoy your Christmas this year.  Remember what's important in life.  Slow down and cherish your moments together before they fade away.  Remember and write down everything you can to help you remember the silly things they do and say.  The sweet sounds of your baby's voices.  Live life.


http://www.caringbridge.org/visit/daxlocke


Wednesday, December 7, 2011

Nothing special

Nothing special going on.  Just life.  Just the normal....for us.  I had Jaemin's planning meeting yesterday at school.  He has his full speech evaluation the week before Christmas and we will hopefully hear from the occupational therapist soon, for her evaluation.  She warned me how hard it is to qualify by state standards and even though she agreed with me on his possible sensory issues unless he has other deficits he probably won't qualify. I'm just going to go with the flow and see how it all goes.  If he doesn't qualify now we can have him evaluated again at 4 years old, if we still feel he has things going on.  He has been doing really well lately in all of the other areas, so maybe things are starting to click for him a bit?  Every kid develops differently and at different times.  We just have to keep up.  I wouldn't trade him for the whole world.

Let's see.  We had Chelsi's Christmas program this week.  It was cute...kindergartners always are!  When we left one of the boys in her class yelled I love you from his mom's car.  I would normally have been taken aback, but he is one of the 1/2 Korean twins in her class and because there are rarely Asians in our school the 3 of them latched onto each other.  So, it was pretty cute.  He's pretty fascinated with her since she looks like his mom's family.  And well, Chelsi....she loves everybody and she'll tell you that.  Thank goodness for happy go lucky, sweet kids.

The other 3 are surviving the end of the 1st semester in school.  Cole will hopefully get through Spanish and then he'll move into computer class next semester, which I'm guessing he'll do much better in.  More his forte.  And he really seems to be enjoying wrestling and I'm so happy he is.  I hope he is able to stay in it since it seems to be doing so much for his esteem and happiness.  I want nothing more than his happiness.  Chase says school is getting harder.  They're trying harder to do a better job of preparing the middle schoolers for Freshman year, so I think they sort of switched gears on him.  So while he's not doing as well as he normally does we're trying to give him some room to figure it all out again and adjust.  Chase will do fine.  He always does.  He has a good, logical head.  Kaelin's still doing fine in school.  She gets a little overwhelmed with math sometimes.  It's just not her strong suite, but we're hoping if we keep quizzing her and helping her it will come easier with time.  She's smart, but sometimes she just doesn't have enough confidence in herself.  When she has confidence she can shock you with the things she says. 

I love normal and I'm glad Christmas is almost here.  I love seeing them so excited.  It's not like our kids get things year around, so I wait just for this day to see them get things they've been thinking about all year long.  So, here's to a very normal 2012.

Sunday, December 4, 2011

Bundle of Nerves and a Great Day
























Cole had his first wrestling tournament and first match and it was varsity.  Scary!  Most of these guys at the tournament had been wrestling well before high school.  I was so sick Friday and felt worse on Saturday.  I don't know if I coincidentally had a virus or if it was my nerves, but I really felt awful.  The little kids were REALLY good.  We had to drive 2 hours and were there from 9 to 4.  That's a lot for them.

So, onto Cole.  He lost his first match with a pin, but not very quickly.  He won his second match with a pin and lost his 3rd due to points.  He did EXCELLENT and I am so proud of him.  But, I have to say it was painful to watch.  Watching him turn red and look like he was in pain, which he reassured me he was not, just was scary for me.  I told him I didn't get a picture taken because I was too busy biting my nails.  He was glowing!  He was part of a team for the first time.  Cole never was supposed to compete in any high school sports.  We got this lifted for wrestling so he could live his life and he did.  I pray he gets to enjoy it for many years to come and his valve will wait for him.  But, if his valve doesn't wait he'll be okay.  We've already been talking about the possibility and to enjoy everything while it's here.

My boys is beyond tough in many ways.