Tuesday, June 30, 2009

I've Had Enough of This Emotional Roller Coaster....I'd Like To Get Off Now Please.

I'm done.

I've had it, and if everything could just go our way for a while, I would be ever so grateful.

Is it too much to ask? You know that saying "God never gives you more than you can handle?"

Yah, well I've had enough and I can't handle anymore.

I'm a mess.

I haven't posted for a while because I haven't had anything great to post. I wanted to write a good post, an upbeat post. But everytime I sat down to do it the words wouldn't flow, and I realized it's because in trying to be upbeat I wasn't being honest, not with myself, not with anyone.

Things aren't great. In fact they suck rocks right now.

Thank.you.very.much.

It's not like there is one major thing going on that I am upset about, it's everything. All the stupid little things that are eating away at us are making it so I can't function. I'm sick to my stomach all the time with worry. That and Gallbladder issues still, but mostly worry.

I hate walking around wondering to myself all the time, what is going to happen to us from month to month, week to week, day by day.

I am thankful for Andy's job, but in the same breath I hate it. They are always finding someway to dock his pay for one thing or another. Saying he gets bonus money, then when he only makes the minimum wage instead of above, they take out his bonus money from the paycheck. Somebody please tell me how we are supposed to take care of a family of 6 on 149.00 for two weeks. Then you think, oh well I can get help from the state. Woah ho. No sir, everything is by gross income, and we make juuussssttttt enough over the limit on gross so that we don't qualify for help. Sucks to be us that we have insurance premiums and stupid people that come up with ways to make your paycheck out to be nothing.

Then there is all of these issues going on with the kids.

Dakota is on testosterone and holy cow talk about mood swings. Maybe the whole thing with him not going through puberty would have not been so bad. (He has Klinefelter's syndrome, which is a chromosome disorder. He is XXY instead of XY.) So with these supplements it's causing his body to be in a huge rage of hormones, and by golly he knows everything.

I know. Welcome to being the mom of a teenager. All of the sudden he has a mustache, so I found myself in the shaving aisle at Walmart thinking, I am only 30 yrs old. How is it that I have a son who is shaving.

Well, I know how it happened, but still it's a big wake up call.

Hunter is doing well, but he is the type of kid that thinks it's up to him to make peace with everything. He has become more like a parent to Rhett than a brother, and I am finding myself thinking that I haven't let him just be a kid lately. He hasn't made many friends over here, mainly because there aren't many boys his age. They are all girls. But I depend on him alot because there is no one else to help me with Rhett, and I know it's bad. It's really bad. I just don't know what to do.

He worries about Andy and I. He thinks we are going to get divorced because of all of the stress in our lives. I am beginning to wonder if he has really been asleep late at night when Andy and I have been talking about things. We try to keep the grown up stuff away from the kids, but we do need to talk about things, and late at night seems to be the best time to do it.

Hunter carries the weight of the world on his shoulders, and it makes my heart hurt.

Chloee. Ugh. Many of you know that we have been fighting headaches with her for the last year or so. We have had MRI's scheduled, but they always seem to fall through for some stupid reason or another. Referrals not filled out right, no money to pay for it upfront due to no insurance, blah blah blah.

I have gotten so sick of the run around. I have asked the Dr's if it was really necessary, given that the CT she had came out normal. Well, they were worried given her past neck issues and thought that she possibly had a Chari Malformation. Now I'm not saying that she doesn't, and she DOES certainly have symptoms of it, but I kept thinking, I feel like I am just sitting here not doing anything for her headaches, there has to me something else that can be done besides doping her up with pain medication and Zofran.

So I took her into the Eye Dr.

The girl is blind.

Translation=Guess who got glasses?

She looks cute as a button.

Her prescription is very near what mine is, and I am telling you right now that I am blind. I can't see anything 1 ft in front of me. She is nearsighted just like her momma.

When they first put her up in the chair and asked her to read the letters, starting with the 3rd row down, she couldn't do it, nor the 2nd row, nor the 1st row.

But. She did get the very two top letters.

You know the ones that look like this.....

SL

So I guess she can kinda see right?

Based on these findings I can see why this could have been the culprit for her headaches.

Will it completely cure them? I don't know.

Is $170.00 for glasses better than $2000.00 for an MRI? Most certainly.

As of today she still is having the headaches. But new glasses alone could cause that. She has been wearing them for a few hours, then taking them off for an hour to get used to them. She only has had them since yesterday, so time will tell.

Life would be beautiful if this was the simple answer to our question.

Last but not least, Rhett. Oh Mr. Rhett. I am sure if you follow me on Twitter or Facebook you know all about what is going on with Rhett. Last week we had a cardiology appointment. He had an Echo done, an EKG, and chest xray.

This was the first time we have ever attempted doing an echo without sedating him. He actually did really well. He kept sticking his finger in the goo and wiping it on me, but other than that, he held still and did everything we told him to. I was impressed.

We discussed the leakage around his tricuspid valve, and I know in the past I have said it was his mitral valve. For some reason I kept thinking that was the valve that had the issues. I dunno. However the Mitral valve is the one that is working well, and the tricuspid valve is the one that is giving us grief.

Anyhow. He has some pretty serious leakage going on there. Dr D said that he wouldn't go so far as to call it severe right now, but it's getting there, and with each echo it gets worse.

Which would explain his being tired, the mottling, and the black circles around his eyes all the time. It's not something that needs to be fixed right this second, but we are preparing for another OHS in the future. We don't know exactly when it will be, just that it will happen.

We were also there to discuss the possible narrowing of the coronary artery that Dr. D had suspected, however when we looked at the chest xray we noticed something that could be causing Rhett's chest pain.

See when you have OHS, after they crack you open, (sorry for the visual, I just can't think of anything else to say. It's late. Sue me.) They have to wire you shut. Well given that Rhett was only 4 months old, and 7lbs at the time of his OHS, he has grown quite a bit. It's common for the wires to break as a child grows, but because they are actually in the bone, they generally don't cause any issues.

However. This is Rhett we are talking about. Murphy's Law according to him, is that if something generally doesn't cause an issue in the general population it will be an issue for him.

Such is the case with the pesky wire at the bottom of his sternum right before it ends. He has a wire that has broken and is actually protruding every which way you can think of and poking him in 2 different spots.

Guess who needs surgery to remove that darn wire.

Gah. I know huh?

But before we can do that, Rhett decided that he couldn't just keep things calm around here so he decided to develop a raging infection around a tooth, up into his upper lip, and all the way across the right side of his face into his eye.

See? Under his right eye, how swollen it is? Kinda looked like someone socked him.



A full head shot. You can see his upper lip is swollen too. We call him a Whomodo, which is a cross between a Who and Quasimodo.


Apparently Loratab makes you fall asleep in unusual places.


Not one of better days.


Apparently Loratab can also make you feel extremely happy as well.


Sitting on the living room floor watching Signing Time, and signing "Cow". Leah's farm is still his all time fave.


Yah, so that is what landed us in the ER over the weekend, and in the dentist office this week.



Good news? Rhett did everything the dentist asked him to do, including opening and closing his mouth and keeping his mouth closed and biting down on the little card thing for an xray. In fact he left teeth marks in it he bit down so hard.


I have a hard time biting on those things without gagging, but Rhett was a champ.

Long story short we go in a week from Thursday to have it extracted. It will be done just in the office and not under general anesthesia in the OR. He is on some heavy duty antibiotics and Loratab for pain, and he looks like a cross between a Who and Quasimodo, but he is hanging in there.

I wish I could say the same for me. I have hung in there for so long that all of this crap has me at my wits end. It's alot for 1 person to deal with. Especially when you add in our normal stuff, which for the typical family would be abnormal.

I'm not quite sure what to do anymore. You would think that this hanging by a thread would stop after a while, but it doesn't. I just keep on hanging.

I really am ready for our lives to calm down. I wish I could take a lesson in Rhett's philosophy of life, and continue to battle everything and smile through it all. But I'm tired.

Super.Duper.Tired.

16 comments:

cori-girl said...

hey =)
hang in there.
i wish i had more to say, but *here* is a whole heap of prayer for you.
love, cori...who has been blog-stalking for almost a year.

Shari said...

Oh Pam: I wish I could be right there to be your friend. I have wondered where you have been. Hang in there! I pray something changes soon.

Molly C said...

I pray for you guys every night. I'm honestly not surprised you're tired. You have been through more medical stuff than most people do in 20 years. Sweetie, I wish there was something I could do. I really do. So for now, prayers and hugs. Lets hope the glasses help and the tooth extraction goes well

stephanie said...

I'm praying for you! I wish I had some words of wisdom that no one told you yet, but I'm all out.Your life takes my breath away,wish I was closer to help with the heavy load you have to carry. Try to stay strong.

ABandCsMom said...

I hear what you're saying. It feels like the walls are closing in around you. However, I also hear a very strong woman. You are handling things. The best way you can. In the end, that's all any of us can do. The best we can.
Hang in there. Rhett will be better soon. We will be praying that things turn around quickly for your family. From pay checks to headaches.

RK said...

I'm sorry you can't seem to catch a break. I can't imagine how super duper tired you must be. I can only tell you I'm praying for you guys, have been and will continue to. You're part of our prayers each night before Braska gets in bed.

It really does suck when things happen for no apparent reason, tough things, and they keep happening far past the limit you would have chosen. Survive one hour at a time, one minute sometimes... and I hope your skies brighten very soon.

Kelly Zimm said...

Prayers from Idaho!
I can't wait to see a picture of Chloe in her glasses; I bet she is a doll!
Keep your chin up, girl....this too shall pass :)

Niksmom said...

Oh, girlfriend! OUCH. All of it sucks and I am so sorry. Just keep doing the best you can and take it one day at a time. Are there extended family members or friends you can ask to help with anything so you can get a little bit of a break? Even if it's just having a friend clean your home while you take a nap? Or go to someone else's home while they watch your kids and you take a nap or a bubble bath or something?

Wishing I had a way to help you get a break. I've been to that breaking point too and it just knocks the stuffing out of you. Sending you hugs and prayers. xo

AZ Chapman said...

man pam this is so hard . I wish there was something I could do to make life eaiser.


let me know if there is something I could do

Midwest Mommy said...

Oh my goodness I am so sorry. Things sound so rough right now. I don't know what to say so I am just going to send prayers your way.

Anonymous said...

Boy oh Boy!! Hopefully things will improve for ya shortly. I envy you for having such a wonderful family, Rhett is perfect! I'll be saying prayers for you.

Suzie

Colleen said...

I'm sorry things haven't been easy for you all. All I can say is hang in there, and you are all in my prayers!
Hugs,
Colleen :)

amy said...

hi pam,
i never leave comments. just not my thing. but i want you to know that i think about your family so much and pray for you often.

it's so hard to see good when you're up to your eyeballs in the bad. but you do. i know you're tired and have had it. but look, you are still capturing pictures of rhett's baby blues and his sweet goofy grin in the dentist chair. you can still see what good you have. and that makes you, well, a rock star in my book.

you have been dealt a tough hand. but keep on playing. you never know when you may hit the jackpot!

many, many love and hugs!
amy

Anonymous said...

When you have four kids and two of them have disabilities life is just that way. It sucks. People who try to sugar coat it or claim that life is just heavenly this way are either in deep denial or just liars. Sorry but prayers and hugs don't pay the bills. At least you are honest about life which is a nice change from the "no matter what happens we are blessed" bloggers. Yeah, sure.

Jim Moore said...

Pam,
My 26 year old son has XXYY Syndrome, and I'm the executive director of KS&A--an organization dedicated to X and Y Chromosome Variations. Perhaps I can answer some questions about testosterone and other issues related to XXY. I would prefer to do this in private email, because discussing healthcare issues in a searchable blog may not be such a good idea. :-)
Jim Moore
jmoore at genetic.org (replace "at" with @)
www.genetic.org

My Three Sons said...

Wow, when it rains it pours!! Just when I'm getting back to work and Carson is giving me some rest.....Can we get these kiddos on the same schedule?

I'm sorry to hear all of your problems. I will pray for all of you. I'm putting your family on my church prayer list so hopefully you will start feeling the positive effects.

Hugs to all of you.

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