Thursday, December 4, 2008

What a crazy time...

I can't believe how long it's been since I wrote here. This last month has been so busy with day to day normal crap... I'm loving every minute of it. I'm realizing how much our lives really revolved around appointments, medicine, and blood work. Finally to have a break and enjoy normal things, it's a huge relief.

We're going a while between tests right now. I'm happy and scared. Happy because the doctors finally feel confident in TJ's health to go this long. Scared because we're really assuming A LOT of things are OK. But this is normal. Blood work and appointments weekly aren't. So I am assuming that over time I will get used to this too.

Is it odd that I still count respirations, check blood pressure, and monitor the amount of fluids he drinks? Maybe, but there is where I find my comfort. When all these things are OK, I know he's OK. I'm neurotic, but with purpose! Ha Ha, that makes it alright.

We're getting ready for Christmas here at The Wilson House. I'm holding out hope and faith that this will be a better Christmas and Winter than last year. Santa brought TJ a snow suit and snow boots last year, he never even had the chance to try them on. We were so sick after CHristmas and into the New Year, then into the hospital for the remainder of Winter.

This year Santa's bringing a sled, we're planning on using it every chance we get. We'll be the idiots out with a dusting trying to get our sled to go down a mini-slope! But one thing I've learned from all of this, you take advantage of whatever is put in front of you. Experience it all, because when no one's looking BAM! life kicks you, hard!

We go for blood work next week again. I get blood work too this time. I've spent so much time taking care of TJ that my own health gets pushed aside. So it's time to address that. First of the year I will be coming to terms with the fact that I've allowed my ass to get fatter and I'm using my son's health as an excuse. But I'm waiting til New Years... because that's just what we do. I will be starting back on WeWa, I do miss my chubby chat friends, and I will be walking so I can do some 5K's next summer.

Finally it feels as though I can pay attention to these things. It's taken a while but I hope we stay here. It's nice to feel normal and do normal things.

Monday, October 27, 2008

Catching up

I'm a bad blogger, what can I say. I just can't seem to find the time to sit everyday and blog. I look at some people's sites and I know I'm inadequate.

TJ's birthday was wonderful. Thank you to everyone who sent cards and/or presents. He is starting to realize what mail is and enjoyed getting the envelopes. He got some great gifts. The "Big One" (isn't there always a big one?) was a scooter. He had been using one of these in these in his physical therapy sessions,he really liked it and did well. He liked it better than the bike. I think because he always saw our neighbor Andrew riding his scooter down my dad's hill and TJ knew about scooters from him, he thought they were cooler.

Well, TJ is a scooter kid now. He loves it. One of the things Randy & I had dreamt about when we were buying this house and TJ was so sick in the hospital was TJ riding his tricycle around our floor plan. THis is an old house with the central chimney so it has a round floor plan. It's so much fun. When Randy was finishing the floors, one of the driving thoughts was that TJ will have a blast playing on the hard floors with his bike and cars.

So realize that TJ's bike and scooter are in the house and we have daily chase scenes with one of us on the scooter and him on his bike. He rides the scooter forward and backwards and is starting to try and turn it. He's really impressive.

So he had 2 birthday parties and we all had a great time. Last year was an emotional milestone with his 2 year birthday and all he'd gone through. This year was very much the same. After spending the first part of the year in the hospital again, and dealing with the life and death of the whole things once again, this birthday was a very sweet celebration.

I feel like we've turned a corner of sorts with TJ and his health. Someone asked me if we were back to normal yet. I replied without thinking, "We're learning what our normal will be."I just pray that this continues and I try to trust the health he's found and been given.

WHat's our new normal like? Good question.

Well, medicine is obviously a daily part of it, but not as much as we had been on. RIght now he only takes 4 - 5 doses a day. 2 of those are his anti-rejection or Immuno-Suppressent medicine Prograf (also called FK). He takes Imodium 1 0 2 times a day and he takes Sodium Bicarbonate once a day. That's it. Amazing. Last year we were on 10 different meds and 2 dozen doses. There are days I have to stop and think to myself, have I forgotten something. Nope, just don't have as many to give. It's nice. We have our days back again. We have our nights back again. I don't have to wake him up in the middle of the night for meds. He only takes 1 medicine at a time now, I don't have to give more than one and hope he doesn't get sick on them. I'm getting spoiled

Sanitizer and hand washing now that we are getting out and about more is almost a little obsessive. We have to keep our hands clean, it's the best way to avoid getting sick.

Normal 3 year old stuff, playing, reading, fighting, tantrums, laughing, jokes, and games. Let us not forget coloring, painting, and Play-doh. Dinosaurs, Bob the Builder, WOnder Pets, Caillou, Clifford, George, and don't leave out anay and all construction vehicles.

Our normal is great. I find myself unwinding and yelling less. I find myself having more patience and being more creative. I find myself giving thanks more and more every day.

Our normal life is slower and calmer than it was a year ago. Less doctors and appointments, less stress. It's nice, I can see our future again.

TJ did have a clinic visit this last week. At clinic they check bloodwork, Echo, EKG, and do a hands on physical exam. He is 39 1/2 inches tall and 40 pounds! He's a big boy, but appropriately big. Not overweight and putting on muscle, that's a good thing. The doctors were thrilled at how good he looked.

His echo looked great, EKG was normal, and overall good blood work.

We do have a potassium issue, we're really high. Almost to the point we were hospitalized before. His immuno-suppressent causes that. We need to watch Potassium rich foods and avoid them. I will admit that we havent been giving it much thought, oops! So this weekend we cut back on some of his foods, we go tomorrow AM to recheck and see how we did.

Liver enzymes were the other problem, they are elevated again. The Liver docs think this is due to EBV Disease. Yup, that's right we don't just have Epstein Barr Virus, we now have the freaking disease. Actually nothing really changed except what they are calling it. It's because he is immuno-suppressed. His immune system can't stop the virus from reproducing, so even though he doesn't have an actual infection, his body is dealing with the virus. This virus commonly causing liver inflammation, thus the elevated Liver Enzymes.

They want to track his EBV levels and his LFT's (that's the liver tests) monthly and monitor them. THey aren't compelled to do anything because he isn't presenting any symptoms. They think he will have these elevated numbers for a while, years possibly.

The possibility of the PTLD (what he had Jan - March) is still there and there is no crystal ball that tells us when or if it will come back. It could rear it's ugly head anytime, even years from now. I try not to think about that and instead focus on how well he looks and his energy that just radiates off him

It's that energy that is so reassuring. When he was at his sickest, you couldn't feel him. That used to scare the hell out of me. Now you can feel him before even touching him. It's the way it should be. I'm trying not to panic about all the crap that "could" happen and instead focus on what is happening. Easier said than done for a Mom, I'm sure a lot of you know what I mean.

Alright, I've babbled long enough, wrappin up. Fingers crossed potassium is better today and we can go a couple weeks without more trips to doctors.

Wednesday, October 15, 2008

Happy BIrthday TJ!

Happy Birthday my beautiful boy.

You are an inspiration to me every day.

I want to be a better person, a better Mom because of you. You remind me that miracles happen and good people exist and help others daily. You make me stop and look around, you make me stop and enjoy YOU.

We get so wrapped up in our day to day lives and the dramas that ensue, we get so busy doing this and doing that, we forget to BE. Don't do, just be.

You help to me to BE. To be in a moment and enjoy every little aspect of that moment, a hug, a smile, a special look when you figure something out, a scream, a fight, I treasure every one them.

All we've been through makes me feel as though each day is an extra special day to be celebrated.

I say a prayer thanking GOD for gifting you to me.

I say a prayer thanking GOD for allowing you to stay with me.

I say a prayer asking GOD to please continue healing your body.

I say a prayer asking GOD to please keep you strong.

I say a prayer rejoicing and celebrating YOU and your life.

I say all these prayers with a full heart filled with love & gratitude.

I also remember today another little boy and his Mother. This little boy I imagine as a guardian angel watching over TJ. This little boy gave TJ his life and his heart. I say prayers today to that family, thank you for giving my son a second life.

As I sit and remember TJ's birth, I wonder when that little boy's birthday was. I think of the much different thoughts that Mother has on that day. I cry for her once again.

Please say an extra prayer today for our donor family. Because of them TJ is here today celebrating a 3rd birthday.

We always say how amazing medical science is, and how what they can do now is amazing. But none of it would be possible without the selfless acts of donor families.

They are the true heroes.

Wednesday, September 17, 2008

Post hospital rambling and a learning experience for Mommy.

As I was saying before, what a difference this hospitalization was for us. TJ & Mommy both. I felt different throughout the whole thing. Even the phone call didn't set my heart into panic mode. It was just kinda matter of fact, deal with it, come home. That's exactly what happened.

TJ was a bear for most of the time, he didn't want to be there at all and made it very known to all that came near. He didn't want to be there and he didn't like anyone. He looked at a nurse drawing blood and in a tearful hurt voice told her "You make me Sad." I don't know who was more sad at that moment, TJ or the nurse. She felt really bad, but it's what we have to do.

He'll eventually learn that certain things have to be done and to grin and bear it. It sucks, really, but he's alive and living life and enjoying so manythings, it makes it all worthwhile.

I see other patients who have so many complications and medicines and tubes and devices hooked up to them. I thank God everytime I see them. No, I wouldn't have chosen this road for us or for TJ, but at least I have a relatively healthy child who can run around and play most of the time. There are so many kids out there who will live a lifetime from a wheelchair or with a ventilator hooked up to their throat. How can I complain about our life?

The steroids they gave him to combat the rejection make him HYPER! I mean can't keep up with him, bouncing off the wall, can't focus, grabbing things quicker than you can blink, and crying or screaming for no apparant reason HYPER. Seriously, I was at my end yesterday afternoon. He was nuts.

Today he's much calmer and is actually able to sit and play and be calm. He seems much happier, so therefore so is mommy :)

I had a horrifying moment yesterday, I'm still horrified by it. You know that saying "Kids will put anything they can in their mouth," well TJ hasn't done that for a while, until yesterday.

Now remember he's on a immuno-supressant to keep his immune system compromised so he won't reject. This means we have to always wash hands, use sanitizer, not touch our face... blah, blah, blah. HA Try to do all that with a toddler! You can see where this is going right?

So we're at the checkout line of the grocery store, I have emptied the cart and placed the "Place Between Orders" stick at the end of my groceries so the next person can start unloading. I reach/lean around TJ, who is sitting in the front of the cart, grab my wallet and when I stand back up I see that he has...

the "Place between orders' stick - IN HIS MOUTH!!!!! pretending it's a bone. BLAHH!!!!

*cue sirens and flashing red lights*

I freak out and my first and foremost thought is "Oh Shit, I can't sanitize his mouth, what the hell am I supposed to do."

I'm imagining germs and bacteria crawling all over his mouth, bleck! What the hell was he thinking. The cashier is looking at me like I'm nuts. Truth be told, I probably looked a little nuts.

So I'm on watch for the next 3 days. I'm praying he didn't actually "lick" the damn thing. I keep thinking about the raw chicken juice and all the other bacteria ridden food things that sit on that grocery belt. *Shudder* That stick touches all of that and how many hands. Even if he WASN'T immuno-compromised I think I would be freaking out, it's so gross.

I don't know what he was thinking, well I know he was pretending it was a bone, so probably he was thinking "I'm a Dog." But that doesn't help the situation.

So lessons learned.

1. Steroid jacked children are very quick
2. Never underestimate a 3 year olds randomness
3. Add Scope to the "on the go" bag

Sunday, September 14, 2008

A step back in time

We're back at the hospital. TJ was having a pretty bad rejection, so in we came for steroid treatments.

This time around is so very different. In the past TJ has always been the life of the floor. He was always out of bed and chasing after his favorite nurse or doctor. THis time not at all. He is really upset about being back in the hospital. He doesn't want to see any nurse or doctor. In fact he tells them to "Get Out, Please" at least he's polite about it.

Being paged and interrupted, so I guess I'll try to finish this later.

Thursday, September 11, 2008

I'm a Piano Teacher!

I've been saying it but I mean it for real. I have students and I really am a Piano Teacher! I'm not just a Mommy, although that's a great thing to be. I'm not just a wife, although that too is a great thing to be. I'm a Piano Teacher, I'm Lori, and I am finally reconnecting to a piece of me that has been lost.

It's been so long since I've taught. Last December TJ was so sick that I was cancelling at least 1 night every week and we were in the hospital December 18th - 22nd. It didn't leave a lot of time to see students.

So finally after 9 months, I'm finally starting to teach again. My first night was Tuesday and it felt so good. It felt natural and it felt right. I had started questioning if I should pursue teaching again or if I should try to find some retail store to hire me. This left me without a doubt, I am a teacher. I've always felt like a teacher, I've always acted as a teacher, and I'm not turning my back on it.

The last 3 years of my life have been so much about TJ. Even before he was sick my life seemed to revolve around him. WHen he started daycare and I had a full teaching schedule I was happier than I'd been for a while. I had time and I had ME back.

After transplant Daycare became an impossiblity and my life's focus became TJ and making sure I did EVERYTHING to keep him healthy. I couldn't even fathom the thought that I could lose my son. My life was him.

Now he's doing better, he's stronger than he's been in over a year and Randy & I finally feel good about me teaching adn being out of the house.

Can I tell you, driving in my car without the distraction of a 3 year old in the back seat is an experience I haven't had it a while. It was weird. I'm so used to the rear view mirror being adjusted down so I can see him, suddenly I can see my whole back window.

I did experience a slight euphoria of freedom on that drive to my students. It was empowering and freeing. I was able to breathe and relax in a way I haven't in a long time. My Time. I don't have that in my day to day life, unless I stay up until 1 AM to get it. No wonder I'm tired every morning

I teach again tonight and I'm really looking forward to it. It's finally a creative outlet for me. I feel like a bad person because after all TJ's been through I want time away from him, but I also think it is healthy for me to have time away from him. The two of us spend 24/7 with each other, he's sick of me too!

I have a piece of me back. It feels good to reconnect with that piece, it's been missing. Now if we can just get to our house! Our environment and life just doesn't reflect who we are. It's OK to visit that for a while, but it's a strain to live in surroundings that don't fit you. It's been a strain for almost a year now. I will be so happy to have TJ, Randy, my teaching, and a home that belongs to us. I keep saying it's coming, it's coming. One more step...

Monday, September 8, 2008

The new normal?

It's funny how things end up being normal. They aren't the same as they used to be, they may not even be "right", but if it stays the same long enough we accept. We adapt, we move on.

TJ is still doing really well. His LFT's are still high, but funny, I'm not even alarmed anymore. The nurse gives me the blood results and I'm like yeah, yeah, yeah, they've been that high for a month. Whatever.

WHATEVER!!!???!!! Is that really my thought. Yes. Yes, it is really my thought. A month ago I was freaking out, now it's just normal. It amazes how messed up our blood work and tests can be but yet, we feel fine and would never know something was off.

We are having more blood work. Every 3 - 4 days we have to go in and stuck for a vial or 2 of blood. His immuno-suppressant level is off. I think because he's grown so much and because his belly is getting better. Having diarrhea will cause this level to go up, his diarrhea is finally easing up and going away. I think that's causing it to drop.

So in at 8 AM for blood work, TJ LOVES that! Not! I'm hoping the increases they're making in his dose will bring it enough and stabilize so we can go back to just once a week and then maybe back to the 3 weeks. That was nice, I felt like a regular person with a regular kid when we were doing that.

We had a GREAT Weekend, I mean great. TJ's uncle put together a huge fundraiser up in Erie Pa. It was a casino night, black jack, roulette, scratch tickets, Chinese auction... Lots of fun. They talked to a local Band - The M-80's, and they volunteered to play for the event.

Well, not only did The M-80's play, they were pushing the event at all their other gigs. They also were taking up a collection at these other gigs too. The band presented us with a big check, literally a big cardboard check at the beginning of the night and had 2 TV crews there too.

TJ made himself right at home with these men and it warmed my heart to see them taking him under their wings and giving him the time of his life. What would be the time of his life?

He lived it up like a Rock Star!

The band let him up on the stage with them and allowed him to play their instruments with them. It was so good to see TJ doing all of this and enjoying himself so much. I can tell you I now have a very soft spot for those men, they gave TJ a night we never could.

He loved the Drums the most, but took a turn on the guitars and piano too. The piano were 2 stacked keyboards and I'm proud to say he took a second spin on them. He had a really good time and the crowd loved it. I don't know how many pictures of my child are now out there in the world, but I can tell you as he was at the mike and guitars the phones were open and everyone was a clicking.

Drums, that's just what I as a classical pianist wanted my child to take up! *Snort*
Of course this is where the Drum Major in me kicks in and is hooting, Drum Cadences RULE!

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.

Wednesday, July 30, 2008

Feeling Stagnant


Our house is pretty much done, we've been moving little things in and switching over our address. It looks amazing, Randy really has done an amazing job.

There are so many things that I feel are up in limbo until we are actually finished. My job for one, my life for another, even TJ's life. There are things I find myself daily saying, when we get into our new house "____" will be different. I've been saying this all summer.

Where we've been just isn't big enough or allow us the living set up we need. TJ has no where to run or play in the house, and outside the yard isn't the best for a toddler.

TJ's been doing OK lately. Still having the poop issues, but that seems to be the story of our lives. They said that this is sometimes a problem with transplant kids, I would never have guessed.

We go for blood work again on tomorrow. Hopefully some things have improved, I'll feel better.

Again a reason why I don't want to start anything new, if TJ gets sick again I'll just have to stop. So much of my emotional state lies with his blood work. If any numbers are off my life spins for a few days. every little fart, cough, and burp is analyzed and I am all touchy about everything.

So there's a ton of things I need to be doing, I just am having a hard time finding my motivation. It's like I'm stuck in mud and can't get any momentum.

I'm trying to get motivated to clean... so far it's not working.

Tuesday, July 22, 2008

Why do I do this to myself?

So TJ has been doing very well lately. I'm still juggling foods and meds, but overall he's doing well.

Why do I google Toddler Heart Transplant? Why do I torment myself? Everything I read tells a sad story of sick children who will have miserable lives. That's soooo not what I want to read.

I still want to believe and live in the fantasy that nothing is the matter, everything is normal. The truth is, nothing will ever be normal again.

I'm struggling with health insurance right now. They've raised our rates. Now I need to figure out how to afford this crappy coverage or find other coverage that won't "pre-Existing" condition him.

I worry about his medicaid. We are so dependent on it. THANK GOD we have it. I'm so terrified there will come a day that we won't be able to afford his medicine. Our insurance sucks that bad.

I googled one other time when TJ was first diagnosed with EBV, I wanted to read about that. No, I guess I really didn't. That was when I realized we'd be dealing with a much worse issue, PTLD. and boy did we deal with that. Of course if you believe what you read on the internet, no one ever survives PTLD. Again. why do I do this?

I'm stressed over our finances. I have to get back to work. There are so many things that I've got to worry about, my head aches. I just want to run and hide. THe worst being, if I make a bad decision, TJ is effected more than us.

I need to go to sleep, morning always brings about a change for me. I'll feel better.

Thursday, July 17, 2008

A tired memory

This exact time last year we were going back to see TJ for the first time after his heart transplant. I gotta tell you. I still can't believe all that has happened. I swear I feel like my life got traded out. This wasn't supposed to be, but at the same time it is.

So many emotions have gone on in me over the last 48 hours. Add PMS to the mixture and I'm a walking nerve.

Tonight we celebrated. I can't stop thinking about our donor family. They didn't celebrate.

I'm tired. I'll need to go to bed here fast. It's funny how your subconscious protects you. Usually I'm a late night blogger. The last few nights I can't keep my eyes open. I think it's my subconscious way of protecting myself. If I'm sleeping I can't dwell on things.

SO on that note, I'm to bed. I will post more on this.

Sunday, July 13, 2008

Sometimes you've got to rest

We were supposed to be up early to make it to a 5K this morning. It was part of the Transplant Games. We didn't make it. It was a harsh night with TJ and I decided at 5AM that he really needed to sleep, not get drug off to a race that really doesn't mean a thing to him.

He's missing Randy, so am I but we've got to get this house done. TJ doesn't understand that Daddy needs to work. He just knows he misses him and wants to see him.

Last night Randy didn't make it home before TJ had to go to bed. Now bed times have begun to be rough for us anyways, but last without Daddy to hug... F O R G E T I T ! ! !

We tried to call him, but guess what, no answer. Leaving a message wasn't going to cut it either. TJ wanted his Daddy now.

I ended up putting him in the car and starting off for our house, this was per TJ's request. He needed to hug Daddy, nothing else was going to do it. He flipped for 45 minutes before I just said eff it, we'll go find him, and into the car we went.

I thought at least the ride will put him to sleep. Nope, this kid was so excited to be going to find his daddy he jabbered the whole time. We eneded up passing Randy his way home so I turned around.

We walked in to Daddy in the kitchen and this kid just melts on him. He misses his Daddy.

He didn't sleep well. I thought all that crying would've put him out, nope. He fell asleep around 11:30, was back up at 1:00 AM, needing to see Daddy, 2:00 AM and one last time at 2:30AM. It was at that point I kinda knew we weren't going to make it to the race. WHen my alarm went off at 5:00 AM, I said the heck with it, my child needs rest. I couldn't even imagine what he would've been like today if we had got him up.

So tomorrow is Track & Field. We need ot be at CMU at 8:45 AM. Hopefully he'll have fun. Hopefully we'll have fun. Hopefully it won't be to hot & humid. Hopefully he won't get sick.

Friday, July 11, 2008

Heart Mother

This is from Shannon Kaiser. Her beautiful daughter has many chronic issues, their life is a daily battle. She speaks true and from the heart. I read these words, today of all days and just cried.

Last year on July 11, TJ received his Berlin Heart. It was a turning point for him. It was the beginning of his recovery.

I'm sharing her words, I hope she doesn't mind. I've made some changes to fit our situation.

One day my world came crashing down, I'll never be the same..
They told me that my child was sick.. I thought, am I to blame?
I don't think I can handle this... I'm really not that strong..
It seemed my heart was breaking.. As, I'd loved him for so long.
I will not give up on this child.. despite your best "advice"..
I will give my child a chance.. No matter what the price..
And I will learn all that I need.. to help my child to thrive...
Yes, even a Tracheostomy.. My child will survive!

And he'll need an experimental heart? And we will need to wait?
Alright God I can do this.. I will not curse our fate.
Night time screams, he wakes me often, It serves as my reminder..
How many parents would welcome that sound? Tomorrow Lord, I will be kinder.
Another angel earns their wings.. and I run to my sleeping child's bed..
I watch him then, for quite awhile.. (I bend down and kiss his head)
Then I cry for the parent's whose lives have been broken.. And I look to You wondering why?
Oh Lord, I just can't know your ways.. No matter how I try.

And yet, I trust You hold his life.. (and guide us through each day)
My mind says savor each moment he's here..But my heart whispers,"Please let him stay".
From... pacing the Intensive Care waiting rooms... to sitting by his hospital bed...
From... wishing for a good nights sleep.. to learning every med...
From... wondering will he be alright? to watching him reach out his hands..
with every smile, my heart just melts.. (despite life's harsh demands)
For all who see that faded line.. I look to them and smile..
You see my child is loved so much.. I would face any trial...

That same scar I trace with my finger.. (It's the door to his beautiful heart)
You must have known how much I'd love him.. (Just as You loved him right from the start)
A heart mom is always a heart mom.. (wise beyond all of her years)
And for those who have angels in heaven.. Our hearts share in all of your tears..
I will always remember.. You chose me for him (and no other)
And I'll always embrace that beautiful day.. When I became a "heart mother".

Last year at this time we were trying to get some sleep. Tomorrow Morning, July 11th is when TJ was placed on the Berlin Heart. It was a 6 hour surgery.

The procedure wasn't as simple as it sounded, it never is. I think about this surgery al the time. I have images in my mind I wish I didn't. I wish I never saw him right after this surgery. I questioned what we were doing. He was so sick, Oh My God, he was so sick. It just hits me from time to time.

Our lives are so frail, we forget it and get wrapped up in the stress of daily life. We have to work to pay the bills. We have to work more to pay for the things we want and need. We have to, We have to, We have to. We say these words all the time.

We don't have to do anything. I think the world needs to stop and breathe. Stop and enjoy, stop and remember.

Tim McGraw sings a song, Live Like You Were Dying:

He said I was in my early forties, with a lot of life before me
And one moment came that stopped me on a dime
I spent most of the next days, looking at the x-rays
Talking bout' the options and talking bout' sweet times.
I asked him when it sank in, that this might really be the real end
How's it hit 'cha when you get that kind of news?
Man what did ya do?
He said

I went skydiving
I went rocky mountain climbing
I went two point seven seconds on a bull named Fu Man Chu
And I loved deeper
And I spoke sweeter
And I gave forgiveness I'd been denyin'
And he said some day I hope you get the chance
To live like you were dyin'

He said I was finally the husband, that most the time I wasn't
And I became a friend, a friend would like to have
And all of a sudden goin' fishin, wasn't such an imposition
And I went three times that year I lost my dad
Well I finally read the good book, and I took a good long hard look
At what I'd do if I could do it all again
And then

I went skydiving
I went rocky mountain climbing
I went two point seven seconds on a bull named Fu Man Shu
And I loved deeper
And I spoke sweeter
And I gave forgiveness I'd been denyin'
And he said some day I hope you get the chance
To live like you were dyin'

Like tomorrow was the end
And ya got eternity to think about what to do with it
What should you do with it
What can I do with it
What would I do with it

I went rocky mountain climbing
I went two point seven seconds on a bull named Fu Man Chu
And man I loved deeper
And I spoke sweeter
And I watched an eagle as it was flyin'
And he said some day I hope you get the chance
To live like you were dyin'

I "get"that song. I try to live like that with TJ. Every day cherish, make special memory. I'm not always successful, but I try. Life is what we make of it. If you get lemons, make lemonade.

Positive thoughts are the only thing that gets you through some of this. I've seen nightmarish images, all in the name of medicine. Some have helped, others you wonder.

Life can change in a blink, ask anyone who has ever been in an accident or gotten a "phone call" you know the one you never want to receive. Live your life right and no regrets, Love as much as you can, and if you have kids, hug them often. You'll be happier for it.

Wednesday, July 9, 2008

The tired day went better than expected

With the way I was feeling this morning I thought today would be a downer, I was wrong. We had a good day. We got out of the house and found some excavators to watch. They were supposed to be at our house digging our sewer tap in, but they didn't make it.

TJ's med's all went well and he ate good too, not a bunch of junk. That always makes the medicine and my day better. No diarrhea, no vomit, all good. Tomorrow is a Bactrim day. He hates this medicine and has been known to gag and get sick with it. I strategically dose it. Hopefully I can get it out of the way in the AM so the rest of the day is easy. We'll see how it goes.

The excavator is supposed to be at our house tomorrow. I've got to go up and pay the man and let him in our garage to get stuff. Rumor has it he's going to allow TJ up on his lap to let him "drive" with him. That sounds great doesn't it? You know what's going through my mind? Oh My God, has he been sick lately, did he wash his hands, how many other peopl have used the controls on that machine... these aren't normal thoughts are they? I know they aren't, but I can't help it. We've got to be such germaphobes.

Anti-rejection meds are immuno-suppressants, those drugs significantly affect the immune system. He is highly susceptible to everything and anything. Having him on a strangers lap does not excite me. Who knows wht germs this man is carrying. I know he's doing a nice thing, I know TJ's going to love it, that's why I'm going to let him do it. I'll have the sanitizer on the ready. It's the best we can do.

I need to get pictures while he's up on it, I hope I get some cute ones. I'm wanting to do a letter for his anniversary and include some pics of him, today, healthy. Pictures are an addictive thing, you can never have too many. I love the different effects, the different shots, the artistic, the cute, the emotional. I love pictures.

Tuesday, July 8, 2008

Tired, sucking on coffee

This is a picture of TJ from the 4th. My Sister in Law took it. This is his latest "smile". If you ask him to smile for the camera, this is what you get. He's too funny.

I'm sucking on coffee this morning. Some days, this is one of them, I swear it's the only thing that actually keeps me going. I'm tired. 1 AM medicine doses Suck! It's why I'm exhausted today. I either stay up or I risk missing a dose. I'm ashamed to admit, I've done that.

Thank God it's only temporary and not a long term thing. I was giving doses at midnight - 2 AM all the time, but lately I've been giving the med early. My body has gotten used to being in bed by midnight.

Unfortunately anytime a dose is added into our day it measn I have to stay up and give a late dose of something. Last night was one of those nights. This morning I'm dragging.

I walked last night and pushed TJ in his stroller. I really walked, like sweat my ass off and was HOT! I am mean hot, you know that inner radiating heat that comes off you when you're really working. That was me. I feel good today, except for being tired. I have to try and get up there again today and do a double lap. I'm afraid I'm going to die trying. There are some monster hills.

Transplant games coming up. Getting nervous about being at the right places at the right times.

Sunday, July 6, 2008

One of those days

I knew after the foods he ate on the fourth that we'd eventually pay the price. He's been sick 2 days in a row now. He's cranky and all he wants to do is suck on a bottle, which doesn't help his belly one little bit. When I try to tell him this he just freaks out, 2 year olds!

I'm hoping tomorrow will get us back on track. I struggle so much sometimes on what to feed him, what he'll ea, what he wants... Lately all he wants is Ice Cream for breakfast, I just can't do it so our day starts out bad and just carries on from there. I hate that I get so frustrated. I end up yelling at him ,which again, doesn't help matters.

I just don't know how other mothers do it. I swear I'm going crazy some days. I wish I had more patience, I wish I was better organize, I wish I had a place to escape to sometimes. Today was one of those days.

I used to imagine my life, I used to be able to plan my life. Now I respond to my child day in and day out. I judge medicine timing by how he's acting, I decide food and meals by how he's feeling, I base my days and weeks completely on him. I never imagined I would be so out of control of my own life. I used to plan, plan, plan. Now my best laid plans go to hell in a handbasket by 10AM if he's not eating well or screaming for something I don't have.

I'm tired, I'm going to bed. Tomorrow is a new day, it will all be better in the morning, I hope. Hopefully I'm not cleaning up poop or puke at 4 AM. That always sucks.

Saturday, July 5, 2008

What a different 4th of July

Last year was such a sad 4th of July. We were in ICU Praying to God to please spare our child and allow him to stay with us. This year we are praying to God in gratitude and love.

TJ had a great 4th of July. What a difference from last year. We went to parades, had picnic, he got to play with his cousin, and set off a TON of fireworks. We were all celebrating TJ and his health. TJ didn't quite understand the significance of all of it. He was more focused on getting the candy from the parade.

I can tell you all day I kept thinking back to last year. I've been doing that a lot lately. Can't help it. The joy I feel is overwhelming. The fear I still feel is overwhelming. I 've been so worried for him and about his health for so long, it's like that's all I know. I keep wanting to believe we're going to be OK, but really I don't know that. Every other time I started to think that way something has crept up and nailed us. I almost feel like it jinxes us!

We are getting geared up for the Transplant Games. I don't really know what he's going to do. He may refuse to throw the ball, he may refuse to run. Who knows, he's 2.

I'm hoping to meet up with some other families. Maybe they can help put my mind at ease. The doctors and nurses at our last clinic visit were so thrilled to see TJ doing so well. I will eventually believe it too. I want to, just fearful.

We still have a ton of fireworks to set off and my husband is already talking about next year. Men! They are too funny. I have a feeling 4ht of July may become one of "our Holidays" you know the one that you are known to all your friends and family for. It falls so close to his transplant anniversary, it almost seems natural that it should.

Today, I'm tired. I need to go and walk with him, try to jog a bit. Right now he's camped out sleeping. Poor kid is still wiped out. He was up late last night and it was a busy hectic day yesterday. I love it!

Friday, June 27, 2008

What is normal?

What is normal? i used to think I knew what it was. I wanted a husband, a couple kids, to be a piano teacher, have a nice but modest home, and ENJOY LIFE! That's normal right?

Not anymore. There are days I feel like I'm sinking, that nothing will ever be right again. if you've ever dealt with a chronic condition, I'm sure you know what I'm talking about. I look around in stores and I see happy families. They are so carefree, they don't even know it. They're rushing around with seemingly important things, but really they're missing life because they've got themselves so wrapped up in supposed business.

I get frustrated, I want to be like that. I wish I could forget, I wish everything could just go back. I still don't fully comprehend that my son will never be 100% healthy again. I still can't believe the list of complications and conditions that we may have to deal with.

I pray that my son will live old enough to be a grandfather, but I don't know if that is realistic. That thought clenches my chest. We always want good and better for our children. I don't know if TJ will ever experience those joys.

Today it kinda struck me again how fragile our lives are. I keep thinking back to a year ago, what was I doing? At midnight, I was probably sitting next to TJ talking to the nurse or brushing his hair off his forehead. I would sit there till 12:30 or 1 AM. I would always be back down again before 6:30 to find out how he did over night. I missed my child terribly.

July 3rd will be a rough day. Once again a momentous day and I'm at the hospital for the anniversary. This time it will be the day we learned tht TJ needed a transplant. I remember these things like they were yesterday.

Tuesday, June 24, 2008

and the Thunder Rolls

We had some wicked storms come through last night. Wind blowing and lightening everywhere. There were times the thunder just rumbled and rumbled. It was a little unnerving. I kept looking out and around for a tornado or funnel cloud. It was that bad.

My big fear has been a bad storm comes through and we are left without electric or worse. I'm not worried about us surviving this, I'm worried about how I care for my son in this situation. Many of his meds require refrigeration, no electric for an extended period of time is not a good thing. If we have to evacuate I need to be sure I can grab all his meds quickly. He can't miss doses of his Immunosupressants. Missing doses will allow him to start rejecting and that can happen within a day or two. It doesn't take long.

So I've decided I need to have panic bags. One that is refrigerator one that is not. I'm compiling a list of everything I need to have in these bags or at least within an arms length of the bag.

Last night as soon as I thought it was getting bad, I pulled out our soft cooler and grabbed a cooler pack. I gathered all his cold meds and room temp meds and threw them in. Added a couple bottles of water and a clean bottle for him. I knew this wasn't a big deal, but if things got bad, I needed to know I had some essentials for a couple hours. I had a flashlight and his blankie and puppy too.

I know to some people this may sound extreme, but I gotta say the fear of my son not having life saving meds is a terrifying thought. What would we do? He has to have these meds, no questions, no conversation, period.

So you'll see on the side here, I've started to compile my lists of must haves.

Sunday, June 22, 2008

Oh My God he just said what!

I always hear parents talk about the things their kids say in public. THere are shows about Kids saying the Darnedest things, it always happens.

Well, it happened for the first time to me. TJ & I were grocery shopping we got to the checkout which is really his problem spot. He likes to grab at anything, magazines, candy, the coolers, anything.

I tried to strategically place him and told him not to touch anything, I'd been so proud of how good he'd been, please don't make me mad. Sure enough I no sooner put 2 things on the belt and he's got magazines off the rack and hanging out of his hands. This is my luck, they rip and now I'm buying magazines, they weren't even good ones!

So I take them from him replace them on the shelf and sternly tell him he is disobeying and if he continues he will receive a punishment when we get home.

He proceeds to lean up and start yelling, "Beat my Butt Mommy, Beat my Butt" "punishment, punishment", "Beat my Butt Mommy". OK, now I don't beat his butt, in fact his usual punishment is 2 - 3 minutes on a chair for time out. But I have been known to threaten.

So I've got people looking at us and I'm thinking Great, I'm gonna be met at the door by security. TJ's laughing up in the front of the buggy, he's thinking he's so funny and really, he is. He's kinda chanting signing his phrases.

I'm sure this is mild in comparison with what some parents go through, I'm sure I'l go through worse, but it sure makes you aware of what you're saying.

I've got a mouth like a truck driver. I make my husband do double take when my mouth gets lit. I can curse and string it together, kinda like art. It's a beautiful thing to some people. Knowing his grasp on the english language, I'm going to really have to watch the mouth. I don't want my next moment to involve the F--- word. That just isn't cute coming from a 2 year old.

Saturday, June 21, 2008

Days like this remind me

A young girl that TJ got to know in the hospital is back in the hospital with a possible serious case of rejection. As I read the journal update from her parents I just cried. The fears of transplant can be incapacitating at times.

I cried because this poor innoent child was going to have to fight for her life, again. I've seen it and lived it twice now. It is an experience I will proabably have to face again. SUch is the life in transplant, at least in our transplant.

Yesterday I was freaking out because TJ was drinking too much from a bottle and too much of the Gatorade G2. Today as I started my day off with this terribel news it hit me like a ton of bricks. What the hell was I freaking out about. TJ is home with us and we were actually being normal. This is cause for celebration and love, not frustration and yelling.

I can't explain how my stomach rolls when I think the other family's situation. I'm so thankful it isn't us, then I feel guilty for thinking such an awful thought. I sit here and I picture Sue sitting at the hospital, it's almost midnight, almost time for vital checks.

Days like this remind me how lucky we've been, but it also reminds me how fragile our life really is. It reminds me how 1 phone call can change our lives forever and how we can endure anything for our children.

I pray the sweet Lily recovers and that this isn't a serious bout of rejection. I pray for my own son's health and pray that he stays healthy enough to remain at home with us.

Saturday, June 7, 2008

Let's try this out and see

Not sure what I'm going to post here. I hope it will be mostly uplifting but I can't make any promises. I've been journaling on my son's COTA pages for almost a year, I enjoy it but I feel a bit censored there.

So here I am. I've been saying I want to write a book about this past year. I may start some of those thoughts here.

Well, here goes. The Everchanging Life of a Transplant Mom.