Saturday, May 31, 2008

Brandon and Tommy

They're always so beautiful when they're sleeping. Even more so when they're cuddled up together! Brandon loves to cuddle up beside Tommy on the floor and both of them will fall asleep beside each other. Thought I'd catch them in the act yesterday and show you how precious and peaceful they looked.

Thursday, May 29, 2008

Revolution Money Exchange site

I found about this last week and thought, hey, why not. It's called Revolution Money Exchange. It's a legitimate thing! It works like paypal, but without the fees. You can even link it up to your bank account and transfer money for free. I've searched high and low on the web for something negative and I can't find a thing. It is an actual bank. You can click the button to sign up. I wouldn't put this on here if I hadn't signed up myself. I love paypal and all, but I'm so tired of the fees! Now my family and I can send money to each other without worrying about going to Western Union or paying paypal's fees. This would be great to have your college student sign up for or newlywed kids to be able to send them money for emergencies. Since it links up with your bank account (like paypal does),you can transfer money from your account on their site, or if someone sends you money, transfer it to your bank account for free as well. Its free to sign up, so why not?

Yeah, I know, I sound like a commercial. But every now and then, we fall onto hard times and my MIL will send us a little through paypal. Sometimes she'll send us a little for birthdays too. I end up paying a fee to paypal. Say she sends me $20, I end up with $18. I like this idea MUCH, much better!

Refer A Friend using Revolution Money Exchange

Sunday, May 25, 2008

The Congenital Heart Defect Awareness Book

This book was made by Vanessa Sapp of CHD H.E.A.R.T. I hope to someday be able to purchase it. Tommy's picture is on page 47 (3rd row, first picture), his name and diagnosis are in the back (alphabetical order) as well as a definition of his heart defect. She has done a WONDERFUL job putting this book together. A word of caution, there are photos in the book of children following heart surgery. Even though these are hard pictures to see, they are a part of our reality.

View this photo book created at One True Media
Congenital Heart Defect Awareness

Wednesday, May 21, 2008

A Fairy Is Born!

The boys and I had a great time today making Tommy laugh. I skipped housecleaning to help Tommy find his voice today. It was worth it.

"...because you see when a new baby laughs for the first time a new fairy is born, and as there are always new babies there are always new fairies. They live in nests on the tops of trees; and the mauve ones are boys and the white ones are girls, and the blue ones are just little sillies who are not sure what they are..."--James Matthew Barrie (Peter Pan, Chapter 17)

Yesterday was, um, interesting. Where do I begin? First a little good news. Tommy tolerated his PMV (that is what lets him make noise) for two hours yesterday. Go Tommy! Then life thumbed it's nose at me. I was casually flitting around the internet and decided to check the weather. It was looking rather cloudy outside. Uh, Tornado???? It was 45 minutes away, so we packed up laptops and medical supplies, grabbed the kids and went to a friend's house about 20 minutes away, but also well south of the storm. Here's where life starts to stink.

We lost Tommy's PMV. It took us about 2 hours after getting home to find it.

When we got home after the storm was over, we came home to no power. It was about 45 minutes later that it came on.

My laptop's dvd rom has decided to quit working. My computer can't even find it.

Both our personal vehicle and Rob's work truck are sitting on empty, we're flat broke and the kids have a doctor's appointment tomorrow. Joy.

Rob's medical bills are starting to pile up. We are going to owe thousands. I keep looking online at the statements and the insurance is not covering anything! How can we pay them if we can't afford a few dollars for gas? I swear, I'm going to post a link to my paypal account for donations! GRRR!

Everyone keeps warning me to take care of myself because I do so much for my family. I am Tommy's sole caregiver. We are qualified for nursing, but there doesn't seem to be any nurses available. SOOO frustrating! My house is reverting to it's old messy ways again and I'm fighting tooth and nail to stay ahead of it. I feel myself starting to unravel. Rob had a stomach ache last night and I actually yelled at him because he asked me to get him a drink of water. I need a break. A long weekend with NO kids, NO responsibility.

I hate bad days.

Sunday, May 18, 2008

The Sound of An Angel!

What a beautiful day!

Saturday, May 17, 2008

Tommy Has a Voice!

Tommy is wearing a Passy-Muir valve. It allows air into the trach, then it closes and he has to breathe out through his mouth and nose. This moves the vocal cords causing sound. I have not heard Tommy's voice since he was born. He was a quiet little preemie and then intubated for heart surgery. He needed the trach to come off the ventilator and other than his birth, I've not heard his sweet voice until today.

Wednesday, May 14, 2008

A Night Out!

Tonight we had dinner with the Lovely, Wonderful ladies of the Summerville Presbyterian Church prayer group. They've been watching over my family and praying for us for about a year now. They've given us gifts for Christmas and bought the boys Easter baskets. Up until tonight, I had only met a couple of the members and only really know one of them and I met her online! We had delicious food and a nice visit. It was nice for all of us because we got to meet our Angels in person and they got to see a physical face (faces) that they've been praying for.

The boys were very good. I really thought someone had switched my children. Matthew was so well-behaved and acted so grown up! Brandon loved playing with my friend's girls, who are close to his age. At the end of the night, the 4 kids got to take home the balloons that were the centerpiece.

I really enjoyed having a night off! Tommy got lots of attention and I got to talk to adults! Rob even enjoyed himself! I'm so glad we got to go!

Monday, May 12, 2008

My Mother's Day

The day started out a little slow, but little things kept creeping in and I actually ended up having a very nice Mother's Day. I didn't have the typical breakfast in bed. There was no brunch or dinner out. These just can't happen in our home. Tommy still needs his routine care when he wakes up. Rob can't dine in a restaurant because of his sodium restrictions. It's a little give and a little take. I'll give up a typical Mother's Day if I can have them all in good health.

We did have a few rough patches, but it wouldn't be our house if there wasn't a little chaos going on. I got particularly angry at Big Lots. I went in to buy a trash can. I found what I wanted on a top shelf in the back of the store. Interestingly enough, all of their trashcans were up on this shelf. The cashier told me that they were short handed, but there were some other cans on the floor in a different area. Those ended up being too big. AHA! I spied an employee. I told her what I needed and she said okay, she'd be right back. 10 minutes later, I'm still standing there. (and very angry, by the way!) I went to the front of the store and there she stands. Not doing a darn thing! I told the cashier what happened and the other employee says "Oh, I forgot!" I told them I was taking my business elsewhere.

There was a happy side to my day as well. First I got my hair cut! See!

I also bought myself a pair of shoes I've been longing for and waiting to go on clearance. Today was that day and lucky me they had ONE pair in my size!

And finally, a little something from the kids. A hand made picture from Matthew and a short and sweet email from Alex.

So, after a nice dinner of pineapple chicken and a nice heart to heart talk with Rob before lights out, my Mother's Day was very nice. I talked to Alex on the phone. I talked to my mom and to my mother in law. Now that the day is officially over, I did have some nice memories made today. Matthew making the picture and Alex sending the email made all the difference in the world. I am so blessed to the the mommy of just wonderful boys. *Warm fuzzies!*

Sunday, May 11, 2008

Happy Mother's Day!

I've seen this several times today. It is by Lori Borgman.

Happy Mother's Day to all of the special needs mommies out there!

My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes.

Of course, that's what she says. That's what mothers have always said.

Mothers lie.

Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

Every mother wants a baby that will roll over, sit up and take those first steps right on schedule. Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.

Call it greed if you want, but we mothers want what we want.

Some mothers get babies with something more.

Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close. Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you.

Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible! That doesn't run in our family. Can this really be happening in our lifetime?

I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.

As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body. Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it.

Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear.I wonder how you endure the praise and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.I even wonder how you endure schmaltzy pieces like this one saluting you, painting you as hero and saint, when you know you’re ordinary. You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes." You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you.

From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require, intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law.

You're a woman who wanted ten fingers and ten toes, and got something more.

You're a wonder.

Saturday, May 10, 2008

Just A Little Vent

Why? Why? Why? OH WHY??? Every time there is a windfall to I end up with nothing? Our stimulus check came yesterday. Rob has been out of work for two weeks, so there is no income. We still have the same old bills to pay, so thank goodness for the stimulus check. It came at the perfect time.

Here's the problem. I spent the majority of it just playing catch up with the bills. So why is Rob out spending it like a fiend on JUNK??? My only request is a haircut. I even have a coupon that will make it less than $5.00 and I can't bring myself to go do it because I just know if I spend that it's going to cut into one of his projects.

You would think after 10 years together that this issue would have finally resolved itself. Nope. I'm still the grown up in the relationship, stressing out about paying important things like the mortgage and the electric bill. He wants to drive to KY to bring his junk Fire bird sitting in his grandfather's barn down here to fix. We don't even need the second car. He just WANTS it, despite the fact it's going to probably put us even farther into debt. I just want to run away.

Now I get the job of making sure everything gets paid, corners get cut even further than they are now, and do without my measly $5.00 haircut. I know life is too short to argue over money, especially now with his health in question.

I know all of this comes down to ME. It's MY problem that I don't have the guts to go spend money to get my hair cut. I guess being the oldest of 6, I learned to do without and I feel guilty for taking for me. I wish the conflict inside me would go away! Either I suck it up and quit crying about it, or I suck it up and do something about it. Neither way is appealing. I hate feeling like this!

Wednesday, May 7, 2008

A Beautiful, Lazy Day!

Rob went for his sleep evaluation yesterday. He didn't spend the night yet, that will be next week. I really like his doctor and I think she is very intuitive and we're on the right track. She was very concerned with how apnea may be affecting Rob's heart.

Today was a gorgeous day outside here in Charleston! I put up some bird feeders and cleaned up my yard. I moved my patio table and chairs to a nice shady spot instead of them sitting on the concrete slab. I much prefer the shade! I raked up a few pine needles and it look 100% better! To be fair, Matthew did bag them for me.

Matthew is very upset today. Rob is supposed to be resting, so that is what I am letting him do. He's been sleeping most of the day away sitting on our love seat. Matthew wants to go fishing! I keep telling him how hot it is outside and that Dad needs as much rest as he can get. These reasons don't matter to a 9 year old. I know I should not discount Matthew's feelings, but I have to look at the big picture here! If Rob is sleeping, it is because his body needs it!

Brandon has been an angel today. Hard to say that about "Mr.-Hide-Raw-Steaks-In-Mommy's-Bed" but yes, he's been great. It's one of those hot, lazy Charleston days around here. He and Tommy are laying in the middle of the floor and alternate between napping and playing. Tommy has learned if he pulls Brandon's hair, Brandon makes a loud noise! Tommy finds this hilarious and pulls even more. Brandon hasn't figured out to just move yet, so there is much caterwauling going on in my home today! I'd much rather hear that than the usual fighting and screaming that is typical most days around here!

Sunday, May 4, 2008

Scared to Lose Him

Rob got home yesterday from the hospital and is feeling great. Today he took Matthew and Brandon to a friends house for a cookout. Tommy and I opted to sit this one out. I've been in a hospital for over a week now and sitting in my silent living room while Tommy naps is Heaven right now.

While I have the time and there is nobody home, I decided to look up information on Congestive Heart Failure. I have read everything from diet and exercise can reverse the affects and the heart will restore itself all the way to 50% of people diagnosed die within five years and many within the first year. That was hard to swallow.

When Rob and I got married, I just wanted us to grow old together. To raise our family and have our dreams come true. I deal with enough stress every single day wondering how much time I have left with Tommy and now my head hurts just thinking I could lose Rob. I can't. I just can't lose him! He's only 34 years old. We have our entire lives ahead of us!

I have been sleeping so much this week and I can't seem to feel rested. I wake up exhausted and with a headache. Of course I'm not telling Rob how I feel. I have to be strong for him. I have to be strong for my boys. Matthew is old enough to understand what is going on. I've tried to explain that even though Daddy will have this forever, as long as he takes his pills and stays on his diet then things will be okay. I think I'm trying to convince myself too.

My mother in law is having a hard time, I think. She still INSISTS that Rob talk to his doctor about being put on ADHD meds. No matter how I try to explain it to her, she won't listen to me. Those meds can KILL him. He attempted to get a new prescription for himself a few months ago. The doctor told him he needed a reevaluation first since it had been 2 years since he'd taken them. At the time we were angry and put out. Now we know that statement saved Robs life.

I will spend the rest of my life saving his life. The food he eats, making sure he takes his medications, walking with him. Making his doctor's appointments for him. I said when Tommy was diagnosed with his heart defects I would do "Whatever It Takes". That doesn't change now. I will do it for Rob too.

Thursday, May 1, 2008

Wonderful Day!

Rob was able to be shocked back into natural sinus rhythm today! So far, so good. Now we start with the medications, the blood thinners, the diet, and exercise. Don't know how much longer he's going to be in the hospital, but this is a fantastic start.

Daily Update on Rob

No major changes today. Rob had an ultrasound of his legs to look for blood clots. So far, they are holding off on the heart cath. Tomorrow (Thursday) he is having a TEE~trans esophageal echocardiogram. He will have a catheter with a camera passed down his throat to look at his heart. They will see whether or not he has any blood clots and then there is the possibility they will shock his heart back to natural rhythm.

The boys and my mother in law came to the hospital today and stayed for several hours. It was a really good day. Since the hospital he is in ONLY treats adult cardiac patients, there is a lot of room oxygen. I just hooked Rob up to one and Tommy up to the other!

Diagram of Tommy's Heart Defects

Diagram of Tommy's Heart Defects
Double Inlet Left Ventricle with Transpostion of the Great Arteries