Saturday, August 23, 2008

Damn Blood Work.

Things have been going so good. TJ has been doing so many things and getting stronger and stronger. We had our clinic visit this past Thursday. I always get nervous leading into these days. In one fail swoop they can take my optimism and change it to gloom.

His heart function looks good and he's gained a ton of weight, which I've been worrying about. They were very happy about the weight. I guess he's been sitting at the same point for a while and should have been gaining.

The only real downer, and it hit me hard, was his blood work. I really hoped it would be better. He's been doing so good. But nope. His LFT's (Liver Function Tests) were elevated, again. i really thought they would've been down. So now we have to consult with the liver docs again.

This is a second round of elevated LFT's for TJ. They don't know if it's the medicine, a virus, or liver damage. Of course any time I hear any little thing my mind jumps off the cliff. I can't even help it. My mind starts spinning worst case scenarios. I never used to do that, I've learned it from this experience. My child just doesn't catch a lot of breaks.

That was Thursday. Friday I spent the day worrying about the docs calling. What were they going to tell me. How bad were things really.

They never called.

Part of me was pissed. I spent the day stressing, it's my kid, why the hell wouldn't they call. The other part of me knows. His numbers really aren't that bad. They aren't going to do anything except maybe some more blood work on Thursday. He's getting blood work done anyways, they may just add some tests.

So the no call isn't a big deal to them. Nothings really going on. So I've gone from stressed and worried to complacent and accepting.

This is TJ's life, it's our life. There are going to be good days. The days can be good enough I can forget what he's gone through, that's amazing.

But there are always going to be appointment days and blood work that brings it all back home again. I don't think I'll ever be relaxed on those days. It's just too easy to have your life blown out of the water. You can go in thinking everything is OK and be told absolutely the opposite and be admitted for tests, treatments, procedures...

I find that as we are moving on from transplant that I'm going through somewhat of a mourning process. I'm mourning the loss of the life I thought we'd have, the life I thought my child would have. It's hard for me to imagine what his life is going to be like. The constant threat of illness is always hovering around him.

I wonder if his transplant will last 20 years, that would be a long time for a heart. That would put him in his early 20's with a new transplant. I wonder if we'll be able to afford a second transplant and if it would be successful. I wonder if he's going to have children or live to have grandchildren. Things I always took for granted, now I can't be sure. It makes me sad.

People say live for the moment, enjoy every second I have with him. Well, that's not good enough. I want a lifetime. I want him to experience everything, I don't want him to have to miss out on anything. He won't be able to play certain sports or engage in certain activities. Close contact is a no no and impact kind of activities aren't recommended. What will he get into, will he be satisfied or will be angry & resentful that he can't do things?

It will be interesting to see how he grows and what he grows into. I just pray that he has a long easy period of health. I've gotten used to the summer and have enjoyed it so much, I want this continue for years! I'm a selfish person, I know.

Therapy is probably in our (my) future. So many things have happened to us that I think it can help us cope and move on. When everything is flying at you, you don't stop and process what is really happening, you hang on and go on autopilot. After, like now, it all comes back to you. It hits you over and over again.

I'm OK. I know sometimes it doesn't always sound like it, but I am. I'm pretty aware of when I'm acting & thinking a little unrationale, I try to laugh about it and wait until my sanity returns. No sudden movements, that's my current motto.

Tuesday, August 19, 2008

Part of a post from our COTA page

TJ the . . . JUMPING BEAN!!!

Yup, that's right. TJ is finally jumping, both feet off the ground pretending to be a frog jumping.

We've been so through the roof the last 24 hours. It's been something that he's struggled with and been a little behind on. It's strange to have him be behind in physical things because he's such a physical kid. He was always ahead before transplant, 6 months in a bed takes a toll on a body.

So he isn't graceful, and he's no Michael Jordan, but he does get himself up and off the ground. His landing needs some work, you can hear him jumping and landing. I'm thinking that isn't completely normal. He jumped in our kitchen/hallway doorway and Randy was coming up the basement steps, right next to where TJ was. (on the other side of the wall)

Randy was all excited when he looked around the corner, I asked him if he saw TJ jump, he said no, but I heard it. It's a kinda THUD sound.

Who is that person in the mirror?

I know I'm not the only one who has ever had that moment. The one where you "see" yourself in a way you've never seen yourself before.

For me my battle with weight has been ongoing for years, hell, a decade. I won for 3 or 4 years then I got pregnant. Now I have fat in places I've never in my entire life even knew about and a body that reminds me of my 60 year old aunt. *shudder* How did my ass get to look like that? and never mind look, it feels HUGE!

The last month I've been doing well with WeWa and have lost close to 10 pounds, yay me! I know. But this past week has me really at a breaking point.

It's a point I've never been at before. I talk about the physical appearance and the shock the mirror can give you, because everyone can relate to that. For me, I'm having a hard time recognizing who I am period.

I used to know who I was. I was Lori, a creative, in control, fun, exciting, compassionate, live life, kinda person. I liked to meditate, ride horses, play & study piano. I was passionate about teaching and I lived for the thrill of success in my job and my hobbies.

I loved that Lori so much. I'm not that person anymore. I'm not even close to that person anymore and I've realized I'm very sad about it. I'm also very angry about it.

I keep saying that everything is going to be different "when we move," but unfortunately that move day keeps getting pushed further and further away. I feel so stifled and caged I can't explain it. People always say make sure you don't live your life for everyone else, live for you. And I agree so much with that statement. But I feel as though I'm not in control of my life at this moment. Everyone else has way too much power over me. When did that happen? I always had my own power, but I now find myself in the unusual position of feeling weak.

I know these struggles are temporary, they really seem trivial when I stop and think about what TJ & I've gone through over the last year. But they are so real for me. There is a day coming in the near future when I will be living in our new home and I will be teaching again and this will be a memory. I'll wonder why it seemed like a big deal at the time.

I keep promising myself that when we move "Lori" will return. I will surround myself with a life that reflects who I am not with a life of someone who is trying to survive and just get by.

I will have a healthy life that has exercise, good food, meditation time, Lori Time, and FAMILY time. I will once again celebrate the sunrise instead of wishing I could go back to sleep for hours. I will get my body back in shape and lose this fat aunt ass. I will be proud of my appearance and not feel self conscience about being in public with my husband.

I know I'm not the only person in the world to go through all of this. I also know there are good reasons for all of this. My life over the last 3 years has been dramatically changed. From the dropped career, to the huge move, to living with my father, to TJ's illness, my life has changed and I will never be that Lori that I loved so much.

My goal is to have my life reflect me again, whoever ME may be at this point.

I thank God for TJ. He makes me laugh so much through the day. He makes all of this worthwhile. For him I will endure anything. For me I will change to make him proud and be the Mom I want to be.

Monday, August 11, 2008

Change of schedule

So usually TJ goes to "sleep" around 10, which means it's 10:30 before I have "my time". I would spend a couple hours writing, reading, playing online, and catching up with stuff. I was usually in bed by 12:30 - 1:00 AM. TJ would be up around 7, take a morning bottle and go back to sleep for another hour or two.

It worked for me. I would get around 7 hours sleep and manage to get a shower before he got up for the day.

The last 3 days he has followed that schedule with ONE EXCEPTION, he doesn't go back to sleep. He is up for the day at 6:45. I'm dyin over here! Thank God for Maxwell House, that's all I can say.

I can tell you with this schedule, I am a CRANKY MOMMY. I try, but I find my patience is nil. I struggle all day.

So since this is day 3 of this new routine, I'm thinking Mommy is going to bed after TJ tonight. This chick can't stay up. I'm a little bummed, I liked my couple hours to myself at night.

I find I just don't ever have any other time to myself. I've always enjoyed having hobbies that were a great source of energy and creativity for me. They kept me motivated and probably helped keep me sane too.

Not sure how this new schedule is going to work for me. I'm hoping it's brief phase and he'll shift again in another week or so. Anyone with a toddler knows that things change all the time.

We've been battling his bottle addiction as well. When we're out and about I don't bring a baby bottle anymore. He has to use the sippy cup or nothing. The sippy cups have a rubber top, so it's kinda like a bottle, it's a good crossover. They're the ones we used when we were originally weaning him over. They worked well then, they seem to be helping now.

I almost wish I hadn't let the hospital give him the bottle back. Ever since he's been obsessed with the damn thing. I've come to hate the bottle. I mean truly dislike that stupid plastic containers. I'll put this in perspective, TJ will drink 2 qts of Cherry sugar free Kool-Aid out of bottles during the course of 1 day if I allowed him. He drinks over 80 oz a day, it is really too much.

With transplant kids fluid is a problem. If there is any rejection happening the fluid complicates everything. Rejection is a form of inflammation, fluid fills those inflammatory cells and soon you have rejection and fluid around the heart. Not a good thing.

So it's a balance. He needs enough to keep his kidneys happy and to stay hydrated with his chronic diarrhea, but too much and it could impair his heart function.

So battle the bottle we are. I can tell you with my lack of sleep his whining for the bottle is painful. It hurts me. I can't stand a whine to begin with, lack of sleep has me twitching. Not a pretty sight, I'll tell you.

You know over the last 3 or 4 days he's done a bunch of cute funny things that I keep saying, I'm going to Blog THAT. Now here I am, and I can't remember any of them. *sigh* I'd like to say that forgetting is a rare thing, unfortunately my memory as of late is very poor. I'm going to have to start carrying a book. Of course I'd lose the book.

I started Facebook, that's only minorly addictive. Holy Crap, I can't quit looking, poking, flairing, and sending Karma. Oh, and let's not forget the quizzes, the gardens, or the people searching.

I can't get anything done. Damn You Facebook!! *shaking fist in air*

Friday, August 8, 2008

Different perspective

You know when TJ & I are home we fight. He is constantly challenging me and I find myself so frustrated and disheartened. I want to be a good mom, but there are days I feel like I am constantly yelling and correcting.

After everything TJ's been through, I feel guilty being like this. I want every one of his moments to be happy and positive and full of fun. There are days it just isn't like that.

I went to my aunts last night with TJ and saw him in a different light. Gone was my fighting, stubborn, disobedient child. Instead here was a little boy who was laughing and playing and listening.

So I am wondering why is he the way he is at home. Is it just part of our routine? Is it me? How can I get him to be this cute child for me on a daily basis?

I really have no answers except I think he gets bored at the house. I try to get housework done and he's bored with the same old toys and scenery.

Maybe he's doing it for attention? But isn't that manipulation? He doesn't want Mommy to do what she needs to do, he wants to her to cater to him. I struggle with this. It's a balancing act that I struggle to balance. I need to do things, I need to play with him, it's hard to do both on some days.

It was nice to see TJ being the sweet kid I know he is. If nothing else, today when he acts up I can remind myself that the child tat is so adorable and loving is in there. Hopefully it will help me stay more tempered.

How is my child knows where my buttons are, but I'm still searching for his?
That's just not right.

Tuesday, August 5, 2008

Fashion at the Farm Show

TJ & I went to the farm show today. It had rained over night so it was a little squishy, but all in all a good day.

TJ had fun got to pet some animals and rode his first Amusement Park rides. He was super excited on the Helicopter ride. He was all grins, in fact he wouldn't get off. Thankfully the place wasn't crowded and the operator didn't care if he took another ride.

We started out the day in Jeans and Boots. He wanted to wear his rubber boots. I don't let him do this often because he knows he's allowed to jump in puddles if he's wearing his boots. However, I thought this could be fun so what the heck.

Within the first 20 feet, his jeans were soaked. They just got worse from there. He had a ball, he found every puddle there was and even wanted to try his feet in the pond. I had to draw the line there, I know mean mommy.

I let him eat what he wanted for lunch, Hot Dogs. He wolfed down one got up and went over to the concession stand. He stood there yelling up at the people ordering himself another one. The kid learns fast! He was polite about it. "EXCUSE ME, I NEED ANOTHER HOT DOG PEES. I EAT THE OTHER ONE, ALL DONE. EXCUSE ME, I NEED ANOTHER HOT DOG PEES. MAAUMM, I NEED ANOTHER HOT DOG, PEES, ONE MORE."

Too Cute, he got another hot dog.

So far he hasn't been sick. I'm kinda expecting some backlash from the day. The food he ate definitely wasn't on the approved diet list. But it was just one day, a kids gotta have fun. So I'll give extra Imodium tonight and tomorrow. We'll also keep him busy and hopefully he won't get sick later tonight. So far so good.

We cut down his Pepcid dose, he's been OK with it. I'm thinking we're going to make this transition OK.

So people at the farm show are very casual in their attire. I mean that's to be expected, they're shoveling poop and mud and handling animals. But the Sheep, they are decked out. I laughed at this. I'm sure there is purpose for it, but flames, really?

Friday, August 1, 2008


Oh My God! TJ's Blood work wasn't bad, in fact it was pretty good. What a relief. I feel so much better. They aren't going to check blood work again until his appointment on the 21st. WOW, 3 weeks without needles. I don't know that we've ever gone that long. Really.

This morning we've got poop issues again. This is an ongoing cycle for us, it may always be, we're not sure. But at least the Imodium works, it's the juggling of it that is hard. I worry about giving too much, then we go the other way. But if I don't give enough, then we have issues.

Today is hot. I think I'm going to feed him and go running around. I have a couple errands to run and need to get to our house. I've got plants and flowers for the outside. It's finally looking more like a home, not just a house.

I'll be updating the folder with pics tonight, so if you're interested check back.

My Public Photo Album

Here is the link to my public photos.

Right now it's house pics, before and after.

Hope you enjoy!

Not so bad

Not so bad, that's how the blood draw was this morning. It can be very emotional, for me and for TJ. But today not so bad.

They managed to hit the vein on the first shot, TJ didn't squirm or cry that bad, and we were done in no time. It's a new thing for us.

I have no idea what this blood work will tell us. I prepare myself for bad, because otherwise it hits me too hard. I really don't think he's that different than he was a couple weeks ago so the numbers will probably be about the same.

His Liver function is what worries me. I hope it hasn't gotten worst. But I really have n ogauge for that.

I should hear tomorrow, late. So until then we carry on. Life can't stop all together.