Long Overdue Update..........

Wow i seriously think I may have broken a Pam's World Record for time periods between blog posts.

Sorry about that. My bad.

See things have been going in a downhill spiral and yeah. I'm not picking myself up anytime soon.

Hmmmmm where to begin.

Let's start with my gallbladder. I have been having issues with it for a while now. They did some testing and during the testing found a mass on my liver. The first initial ultrasound though showed nothing abnormal, but I was still having issues so they did a different test that showed how well my gallbladder was actually functioning.

And the results were........It wasn't.

So at this point, they had already decided that the mass needed to be removed and they were going in, so why not take the gallbladder as well.

Things happened pretty quickly from the day I went and met with the surgeon to surgery day. It wasn't even 24 hrs. Of course they were worried that the mass was malignant, aka as the "C" word.

So on Tuesday the 10th, I gowned up and went under the knife. Hehehe. It was all done laparoscopically, so it's not like they sliced me open, just made a bunch of tiny stab marks all over my belly.

Cause it's funner that way don'tchya know.

A couple of hours later, and a few drinks on my part....of apple juice that is. I got up ran.........okay slowly hobbled........around the nurses station and got my walking papers.

Recovery has been another story.

Ick.

I ended up with an infection, thrush, and some serious pain.

We did get results that the small mass was just benign, but either way I am glad that pesky little thing is out of my body. Along with my gallbladder.

Granted my diet still doesn't consist of many solid foods. I have a really hard time tolerating them. But I can tolerate Applesauce and Jello and Eggs. Other than that it's Icee's all the way baby.

To top it all off, Andy and I have been separated, although he did move back in for this surgery to help take care of the kids. There is no way I could have done it on my own, especially with the complications that I had.

Rhett has been doing well. He is loving school. He is loving riding on the bus, and I am loving that his teacher is a germ freak.......

He talks to no end. His speech therapists love it, and so do all of his aides. Their comments when we did his IEP was that they had never met anyone quite like Rhett as far as his speech skills go. Which is a good thing.

He is doing well in his other areas, of course he has certain ones that he is lacking in, like his gross motor, but he is doing really well. I am so proud of him. This year he has shown us that his lungs are starting to recover from his incident back in 2007.

He is not really into the whole potty training thing yet. We almost had him there a few months back and it went kaput.

Chloee has just lost another tooth and looks so cute with her toothless grin. She is loving school and her teacher has had to find books from upper grade levels for her take home reading to keep her challenged.

Hunter is doing well all things considered. He has really struggled with our separation more than anyone. Him and Andy have always been very close, and they still are, it's just affected him more so than the other kids.

Andy has been great at stepping up and taking care of them. I am very proud of him.

Dakota is doing really well in school. I think letting him go to this school in another town was one of the very best decisions I could have ever made.

I have pictures to post. Just don't have the time to upload them right now.

I hope all of my bloggy friends are doing well, and that you all had a wonderful Thanksgiving!!!!!!

Happy Birthday Rhett!!!!

Today my little boy turned 4.

I can't believe it. 4 years ago he was this little tiny 4lb package wrapped up in tubes and wires, and looked like a chicken. Now he still looks like a chicken, minus the wires.....

Oh how happy this little boy has made me. What an amazing child he is and he truly has so much to offer.

Thank you Rhett. Thank you for making me the person I am today, and thank you for choosing for me to be your mommy. I Love You Forever.

I CAN!!!

Don't look at me and think of the things I can't do, because for every 1 thing that I'm not doing yet, there are 10 other things that I have already mastered.

I can eat a slice of pizza all on my own.

I can roll down a grassy hill just like my peers.

I can tell you I love you not only with my words but with my eyes as well.

I can play trucks and cars and line them up in the living room only to crash them.

I can put in a DVD all on my own...even when mommy tells me not to.

I can climb to the tippy top of the biggest slide and go down it with a huge smile on my face.

I can climb the steps of the bus all by myself each morning and wave goodbye to mommy as I head off into the world.

I can tell you that my favorite food is Spaghetti if you ask me.

I can tell when someone is hurting, and I do whatever I can to make that person better.

But most of all I can smile, and it's my smile that makes the whole world know how amazing I really am.

31 For 21....

Guess what month it is?

OCTOBER!!

Why am I so excited about October?

Because it's Down syndrome awareness Month!!

Well, that, and Rhett is going to be 4 in 6 days too....wahoo!!! We're really shooting for NOT being in the hospital this year on his birthday. :D

So I will be posting every day this month about our little guy, 31 days for Trisomy 21.

Today I would like you to help out though. Please leave a comment telling me either one fact about Down syndrome, or one way that Rhett has changed your life.....and remember to hug someone you love with Down syndrome!!!

At What Point do you Wonder if the Dr's are Doing Enough For Your Child?

Many of you who know me, know that we have issues with the hospital in our state. Many of you know why, and for those of you that don't, I can't really talk about it.

That being said....I am beginning to wonder if they have just given up on Rhett.

Yes. I get it, they are afraid to touch him, and we make sure that everytime we step foot in that hospital, it is crystal clear that anyone who touches him better be on their toes and not screwing things up. Maybe that's a bad thing in certain ways. But in the same breath it's a good thing as well. I won't just stand by and think that they know what's best for him anymore. I won't put my faith in someone who has no idea what this child means to me. But when you get to a point where it seems like they are letting him fall through the cracks, it makes me angry.

We've struggled with gaining weight over the last 9 months. Okay, I'll be honest...he's loosing it. Last year at this time, just before his 3rd birthday he was 37 lbs. This year he is 27 lbs....dripping wet with his clothes on.

His general health is fine. He eats well, and he gets bolus feeds of Elecare throughout the day in his feeding tube.

But his heart is wearing him out. His tricuspid valve is leaking pretty good and he's burning lot's of energy.

The above picture says it all. You can tell that just over the last month there has been a rapid decrease in how he is feeling. He's tired, you can see it in his eyes, see it in his step, as well as his sleeping habits.

I don't think it's fair that the Dr's keep wanting to put off his valve replacement until he's older. I feel like they aren't looking at the whole picture. They are just looking at the fact that the older he is the less surgeries he'll need since that valve won't grow with him.

Don't get me wrong. I totally understand that. I agree with it to a point. But the thing is, is that I don't understand why they have to let him get so sick before doing the replacement. I don't want another surgery. I don't want to ever step foot in that ICU again, knowing that just around the corner my perfect little boy is lying in a hospital bed on life support, while the rest of the world goes on with their lives.

However I don't enjoy just sitting here watching him waste away while his health declines, and the Dr's just sit on the sidelines going hmmmmmm.....

I find myself lately lying in bed with him. Running my fingers across all of the scars on his battleground of a chest. He has had to fight so hard for everything that he has accomplished. I don't think anything has ever come easy for him.....I'm not sure if anything will come easy for him. But I know that whatever he does, I will be there to fight right along with him.

I'll always pick him up when he falls, I'll never leave his bedside when he's sick or had a surgery. I'll always fight for him tooth and nail. I'll never stop.

I'm not afraid to hurt anyone's feelings....if I have to take him to a different state so that he can get the care he deserves I will.

He is my child. My life. It's why I'm here.

The Post In Which I Can't Think Of A Witty Title......

So I'm sure since I am like the queen of blogging....(bwhahahaha)....oh come on, I know you're laughing.....You all have missed what I have to say.

Ahem.

Truth be told I haven't had really good news to report, so I have just been keeping my mouth...(and hands for that matter)....silent.

Ya sure I've been around on Facebook, and Twitter, but I don't know what to do with my blog. I have felt like a big fat whiney baby so therefore didn't want to keep posting oh woe is me posts. But then again I didn't want to lie to myself, that everything is all hunky dory either.

Make sense? I hope so because it sure doesn't to me.

Our biggest thing right now is that Andy and I are not working, nor can we find a job. I am working on getting my GED, and should have that in the next few weeks, (Yes I am a high school drop out....let the trolls be released.....) then I will be off to school for 12 months to become a medical assistant. However I need to find a part time job to work as well, since I will only be going to school for 15 hrs a week.

Andy is currently not working. The car industry, well we held on as long as we could, what else can I say about that?

Stupid freaking economy.

He is currently working on heading back to school as well. He can't go back to production or manufacturing which is what he has done his whole life, nor can he sit for 10-12 hrs at a call center due to his back. He still is going to need pins and rods, and have it fused together in the future, so we are trying to hold out as long as we can on that.

Anywho.....long story short, he has met with the folks at Vocational Rehab and will head to UVU in January to become a teacher. Yes, I know that teachers don't get paid a bunch, but it's not about the money anymore. We don't need alot to survive. Just our measly rent, utilities, and car insurance. Plus gas and food and other items. But that's it. That's all we have. It's all we need. Keeping it simple is much better than all of the silly big extravagant things.

Boy did we learn that the hard way.

I would be content just living in our little three bedroom apartment for the rest of our lives. It's not about moving up with monetary items/material things anymore. It's about growing together and moving up individually and as a family, spiritually and mentally. It's about being together and going for little weekend drives up the canyon. Playing softball on a warm summer evening. That type of stuff.

Things have just plain sucked, there are really no other words for it.

We are waiting for next year when we can claim medical bankruptcy again. I am hoping that we can dig ourselves out of the holes we are in. The medical bills just keep coming in, and I just keep resisting the urge to shred them up for Rat bedding.

I am bound and determined not to let the Utah headlines get me down, the ones that say that people are out numbering the amount of available jobs by 10 to 1 right now. I know that the economy sucks, but I will find a job. Andy will find a job. We just have to, it's all there is to it.

Preferably steady jobs, but ones that are close to home. It can't be so far away that it's not worth it because we pay so much in gas. It doesn't have to pay much. Just something to keep us afloat.

The calender that Andy has been working on is nearly finished. We will be selling them here on the blog in the next month or so. He as well as some of his very talented friends, have done some amazing pictures of your children. Hopefully this calender will help some with our money situation.
You can see some of the pictures here, including the most recent one which is of Rhett himself. Our goal is to sell 5,000 calenders. Which, a portion of that money will go not only go to help with Rhett's medical bills but also towards helping some of our special friends who are in need.

All of the children in this calender share one thing in common, an extra chromosome.

So ya. Alot of rambling, a not to informative update, and I think I am done with this post. I have lots more to talk about, but I am so extremely tired. The kids are tucked in bed, and Andy is waiting for me on the couch to cuddle and watch a movie with him.

I will leave you with some pictures of our latest but CHEAP family adventure.......

Ice Blocking!!!

































I hope you all have a fabulous weekend. The Bird Family sends all of our love to our sick friends, and those in need.

Night Y'all.

Lowering My Expectations.....

Over the last few weeks I have come to realize something.

I need to lower my expectations. I keep thinking that all of the sudden we are going to get a huge break out of the middle of nowhere.

Now. Mind you I don't want this so called break to be just handed to us, I know we have to work for it.

However.

I have expected something big to just happen to make our lives easier. After all, it was just one big thing that made our lives hard to begin with.

You know, that thing that happened back in 2007.

Our lives aren't going to magically be put back together overnight. It's just not going to happen.

Andy lost his job again, I am still not working, and it's not for lack of trying on either of our parts.

Andy can't do the things he used to do. He can't lift 50 lbs repeatedly, nor 20 lbs for that matter. His back is shot. So he has met with the folks at Vocational Rehab, and plans on going back to school. Since he has a disability now, his schooling will be funded 100%.

What does he want to be?

A teacher.

I am so proud of him. I think he would make an amazing teacher, but no matter what he decides on, he will succeed. I have no doubt about that.

I am also headed back to school as well. I am going back to be a medical assistant, it's only 15 hrs a week, for 10-12 months, and I hope to find a small part time job between that as well.

We don't need much to survive.

As I have stated before, all we have is rent, utilities, food, and gas to get back and forth to job interviews. The medical bills can wait. They have waited this long already. It's not going to hurt them to sit some more.

So when I say I am lowering my expectations, I mean that we are going to start out small, and work ourselves into something bigger.

Slowly.

Between now and then, Andy and I are loving being together. We have refocused our lives around each other rather than finances, and we are doing fun things as a family again. Playing cards, family movie night, the important things.

As for our next adventure tomorrow night?

Ice Blocking.

There will be pictures. I promise.