Happy Heartiversary TJ!!!! We went to a friend of TJ's for a playdate and followed that up with family for cake and ice cream here at the house. It was a great day. TJ is aware this year of his new heart. He knows that he had a Heartiversary, he says that it is the day he got his new heart and started to be well. It's hard to talk to a 4 year old about the  immensity of a Heart Transplant. He has asked questions, and we've tried to answer to the point without graphic detail of course, and he knows a bit of it.He declared this to be the best Heartiversary EVER! LOL  TJ is taking swimming lessons again this summer and is doing great. He's a real fish in the water, stroking and breathing, he is fearless and flips and rolls all over the place in the pool.  We have been out on Pap Pap's boat a few times, and TJ is learning to fish, or at least to pet the fish Pap Pap catches. LOL!!  This has been a really happy year for us. TJ is stronger and healthier than he's been since this whole thing began. I've said it before, and I will say it again and again.. God is Great and I am so grateful to his donor family.  Living with TJ and knowing all he's been through, there is no way you can't have faith. I try to remember that everyday is a blessing, tht I need to be thankful for having my child, even when that child is pushing every single button I possess!! *grin* He is a stinker, he is determined, he is stubborn, and do NOT tell him he can't do something, that is a challenge he can't seem to resist. He loves animals, cats especially and develops bonds with them quickly. He is loving the Cars Movie with Lightning McQueen, and he loves older cartoons, Tom and Jerry and the RugRats are favorites right now. DINOSAURS!!! Oh my Dinosaurs, he knows all the names, and has facts for them too, FYI, T-Rex only has 2 fingers, if a dinosaur has more than 2 it is NOT a T-Rex, that must be an Allosaurous.  Ha ha... the boy is filled with this sort of thing, but that is a standard. he counts the fingers on every T-Rex we see.Thomas the Train is still a big thing for us to play with, but he doesn't really watch it too much anymore. Sandbox and playing construction site is a regular occurrence... and he's a speed demon on his bike.
 I could rattle and babble on and on.. but I know people enjoy seeing pictures of TJ.. he's grown so much.          ok, i said I wouldn't ramlble.. but this is really cool, this is an old WWII fighter plane. Our small airport bring in the War Birds, the planes from WWI and WWII for a day every other year. This year TJ was interested in them, so we headed over for him to see. These planes circled our house, so cool to look out your bedroom window and see one of these flying by, really. TJ Mars Bike Parade 2010 Kaine and TJ - July 4, 2010
  The two boys at the end of the night, July 4, 2010... Sweaty, dirty, and filled with S'mores. It was a great 4th this year.
 

I'm soooooooooooooooooooooooooooooo Sorry!

 How did a year go by, seriously?  I can't believe it's been that long. So I owe you all an explanation. You have all supported us and I haven't kept in touch the way I should have.

The last year has been great, and in fact. NORMAL. really he's so normal and healthy right now it amazes me. He is on 2 medicines and the one they are cutting back with the hopes he'll be off it soon. We're so normal, that there are a lot of days, I can kind of push all of this to the side and just live. That has been a great thing to do. Coming here is a reminder, not that I want to forget, but my heart needed some time to just be. To be a Mom to a normal healthy active crazy kid! 

I hope you all forgive me and can understand.

I have a lot to tell you. Let me see... where to start.....

PRESCHOOL!!!

 HE LOVED PRESCHOOL!!!   let me say for the record, it was a bumpy start. LOL He had some problems with his listening and following a schedule, but the teacher was great and worked out a Sticker Chart and he became a star. He loves his letters, and phonics and will count anywhere from 50 - 100 for you. It was amazing the change in him through this year. He loved his teachers, they adored him and if he could go to school with them tomorrow, he would. He keeps asking when is summer gonna be over! 

We have a friend now, Anthony, the two boys play very similarly and are matched pretty well in energy. We get together with him for playdates every now and then. Kaine is still his best friend. If he could live with Kaine, nothing would make him happier. They don't see each other often, but that doesn't seem to matter to those two, they love each other. It's great to see.

OCTOBER - Birthday canceled for .... Swine Flu

Yup, that's right. We all had H1N1. Remarkably TJ was the least sick of all 3 of us. They got him and Randy on Tami-Flu and they recovered pretty well. TJ did have a lingering problem of a chronic Sinus Infection. We had multiple Antibiotics over 3 months, nothing worked. We all decided to go ahead and have his adenoids removed at the beginning of June. Since then, no problems!!

We did manage to get Trick or Treating in. We went to Slippery Rock with friends of ours and their 2 girls...  TJ was ROBIN. His pick, he loves being a Super Hero, in fact he still likes to put on his Halloween costume and be Super Hero TJ. He also likes it when my mom comes over, she's Super Hero Maw Maw. *grinning* She loves that. LOL!!!

CHRISTMAS and the Holidays - 

How wonderful our Christmas was with a healthy child. He can't eat anything with the exception of High Potassium foods, but other than that... he's great. He ran around and played with his cousins.. and it melts my heart. Those special moments... I'm so blessed and grateful to have them.

Special Christmas Memory...  TJ came downstairs Christmas morning and saw our tree all lit up surrounded with his presents...  in total Awe he whispers soft under his breath and gradually getting louder ... "presents, stockings.... I HAVE A STOCKING!!!!  SANTA CAME!!!! DADDY DADDY SANTA CAME!!!"  at which point he grabbed the biggest present and zoomed into the living room squealing! It was a true moment, a child is full glory of Christmas morning. Priceless.

OMG WHO ORDERED 3 FEET OF SNOW!!!!!!!

 Yup that's what we ended up with, amazing.. TJ Loved it. He had a ball. We went sled riding and got to fully experience sled riding in that kind of snow. He had a blast! The dog had a blast, but she didn't love the snow burying her yard, we had to dig her dog runs so she could run around outside... she jumped into it unshoveled and it came over her back. She tried that 3 or 4 times and that was enough for her.

and one last one from the sled riding... HIGH FLYING TJ!

ok....  it's getting late... I'll post again tomorrow... and bring you all the way up to date... more pictures... and more stories.

Love all of you. Thank you for still being here.

2 Years.

It has been 2 years since our lives were put on this road.

I look back and am amazed.

Amazed at what medicine and doctors are capable of.

Amazed at the support and love that has been gifted to us.

Amazed at the wonder of Faith.

Amazed by the Miracles that God does grant.

Amazed at the generousity of a family who gifted another in their darkest hour.

And certainly amazed by the sheer determination and strength of my son.

I'm so thankful for all the Mommy moments I experience. Watching TJ's eyes light up when he figures something out, seeing him swim in the deep water by himself and his look of satisfaction when he looked at me, seeing him run and laugh with the other boys at the playground, checking on him at night when he is sleeping so peacefully..... all these moments are such special moments in my memory.

Seeing him strong and healthy now makes looking back even more stark. It's incredible how small and weak he had become. I didn't realize it then, it was so gradual, but to see pictures and remember you see a startling difference.

I've said it so many times.... God Bless our Donor and his family. Without them and their gift I wouldn't be writing this. I wouldn't have had these moments. And I wouldn't be crying tears of joy right now.... 

I ask all of you to please say a prayer, a prayer for our donor family and a prayer for TJ's continued health. 

I ask one more thing, please make sure you are registered to be an Organ Donor.

http://www.donatelife.net/index.php

God Bless and Love to you all.

So just a little update, Our liver/GI Doc called Saturday. He wanted to go over TJ's blood work. Essentially, he said what our cardiac team did, it's normal. He even went so far to say that in his opinion both numbers were normal and given his history, the elevated numbers we were to be consulting on, never alarmed him. He didn't think they were very elevated at all.

He believes, as do I, that we really don't know what the extent, if any, damage TJ's liver has had. We may be lucky and it will completely recover, or we may see periods where inflammation cause some disfunction. It could be from the EBV or it could be from all the medicine and injury it sustained during his hospitalizations.

But in any case, they look really good right now and we don't need to see him or do anything different.

We shall go back to our regularly scheduled program of "The Summer of TJ" LOL!

Please remember our Donor family, this is our 2 year anniversary week,  I'm sure that family could use all the extra spiritual support we can offer.

God Bless and Love to you all!

Oh My God.... we have good blood work!!!!!

I can not tell you what it means to me to have heard our Transplant coordinator say, "we have TJ's labs back and they look good, really good." 

Here's the Miracle, his elevated LFT's that have steadily been increasing.... aren't anymore - today the one number was absolutely normal and the second was a high normal!!!! His liver is Good! How does that happen?!???!!!  God is Good, prayers work, and God truly does hear us. I have no other explanation or belief. 

This time of year is so emotional for me, I sit here crying tears of joy over how blessed we are to have this health and time. Each day it seems he gets a little stronger or learns something new. 

His Echo and EKG are both good and he measured a whopping 48 pounds and 43 1/2 inches tall! Can you believe it? We had a couple special visitors today, Jo-Jo, TJ's girlfriend (grin) and Elizabeth, TJ's Physical Therapist while he was an inpatient stopped in to see us. 

Jo-Jo spent about an hour playing and talking to him. She helped him and us through so much, it was nice to see her get to engage with him now, as a strong boy, not a sick toddler. 

Everyone commented on his tan and how blond he is, they also comment on how strong he is. 

We talked to the doctor about some Boy Do's and Don'ts - like fishing, exploring, and the likes. There are things he just can't be exposed to, unchlorinated water is a huge risk, so he can't swim in it, but he can FISH!!! I hope Pap Pap gets ready, cause this kid wants to catch some Blue Gill.

Unfortunately some of the normal boy exploring stuff we have to watch, Looking for salamanders, turtles, worms, and other wildlife extravaganzas need to be discouraged. The doctor also told me to prepare myself, because TJ will manage to find exploration time, and just wash him up really good after. But to discourage and try to avoid it, for now at least.

They like the swimming lessons we have him in, it's a great exercise and sport for him. So they are happy we're encouraging that.

All in all a good clinic visit with AMAZING results.

On a side note,this week we also spent 2 days at Idlewild with Rocky, Lon, and Kaine. Those two boys loved being together, even when they were fighting. They both woke up on Wednesday talking about the other one! 

Our plans for the rest of the summer is to continue what we're doing. Having fun, living every moment we can, oh.... and to get to the pool for as much swimming and playtime as possible! 

GOD BLESS!

Bike Parade 2009

Kaine & Rocky are in the front of this picture, Randy & TJ towards the back. It was AWESOME !!!!  to see him riding his bike along with all the other kids. He had a ball and we saw so many people who have been with us through this journey. It feels good to be able to say, YES, He's good! 

I say prayers of gratitude and strength for our Donor Family. I'm sure this holiday has to be hard for them. Please include them in yours. WIthout them, TJ wouldn't be here today and we wouldn't have the joy he brings to us every day.

Happy Fourth of July!!!! 2009

TJ & Bailey after the Bike Parade. It was so good to see him with all the other kids this year. He seems to be getting stronger and stronger. This is 2 years post transplant and 1 year post PTLD. It's amazing the differences year to year.

Hi everyone. It's hard to believe that 2 years ago TJ was in the CICU fighting for his life. This time then we were finding out just how bad his heart was and starting the paperwork for his Berlin Heart. I think July 2nd he was officially listed for a heart. 

He's been doing great at home. This summer is so different from our last 2. He's playing with kids and running, swimming, and being normal. It's so good to see him doing all of these things.

His liver function is still off, but no one is rushing to do anything, they are still monitoring it from Blood work. We see doctors next week and suspect we'll find out a little more then. But I'm not really expecting big news. I'm paranoid about not expecting something, so I'm trying to make myself be worried LOL! Then I see him swimming and running with all the kids and I just can't do it. He's doing so well right now. I love it!

He just wrapped up his first Swim Lessons. He's come so far, he can now sorta swim under water, holding his breath. He can retrieve things off the bottom of the pool, and is slowly getting better at floating. He's done well with them. He wants to do it again and the pool offers another session in 2 weeks, so I think we're going to try and get him signed up again.

Today they let the kids play in the shallow end and on the water slide for the final day. They gave the kids snacks and report cards at the end too. It was fun.

I, of course, took some pics..... 

There are a couple more in the Photo Album http://www.cotafortjw.com/node/516 You'll have to look past the Idlewild pics, and go to the end, but they're in there!

 We're planning on a big 4th of July. I think TJ's going to be in the Kid's Bike Parade and of course cook out and Fireworks! This is always an emotional time of year for us. And we truly feel like celebrating this year.

Monday & Tuesday we will be back at Idlewild with his cousin Kaine. He's looking forward to that. THey have a big water park there so we're hoping for nice weather so we can hit that.

I'll keep you all posted on TJ's doings and going ons, and of course update after the Thursday's appointment. 

Happy 4th of July to you all !

TJ had some bloodwork done this week. I got a message last night from the docs about a couple of things. The biggest being, his liver function is slowly and consistently creeping up again. Each time we've had bloodwork, it's been up a little. It keeps being a little. Well, they have finally reached their threshold for "a little" and we are getting back in touch with his GI/Liver doctor. 

He continues to be the same, running around and being 100% TJ full of energy and strength, so I'm trying to not be paranoid. But it feels like a reality check for us. We kinda fell into an "everything is OK" mentality. We know better. While TJ thrives, his underlying problems are all still there, and ironically it's not his heart! His heart is functioning great. But when he was so sick in the hospital his kidneys and liver, as well as his other systems, all took pretty considerable hits. We've been very fortunate that everything seems to be recovering, but we do still have some kidney issues and obviously liver too.

I'll post again once I've talked to the GI docs and find out what they want done, they may just want to watch it for another month, or they may want to do some bloodwork to cover some other tests. We haven't seen the Doctor for a while, so he may want to see him too.

 Again remaining positive, we've had this before, and his levels were MUCH higher then and they came down on their own.

I don't know about his the rest of his bloodwork, except his anti-rejection med level was a little low, so they bumped the dose up a bit. Not surprising considering his growth and how much he's growing.

When I know more I'll post again.

Happy Memorial Day Weekend everyone!

We went to Idlewild with friends of ours yesterday, Saturday. You can see the pics here - http://www.cotafortjw.com/node/516  We had a great time. Our friends Paul & Nicki have 2 girls close to TJ's age. Bella, is 2 1/2 and Gia, is 4. The 3 kids really got a long well together. 

We didn't know how TJ would do having to tke turns on the rides, but we had nothing to worry about there. He was so well behaved and so good, Randy & I were both very impressed. 

TJ rode everything we could, the parks pretty big so we missed some rides. But he wanted to go on things like the Feris Wheel and the Spider.... he likes to go high and fast. Oh, and spinning doesn't really bother him, he had a ball.

The Kiddie Land is pretty big a this park and because of his size, he was able to ride a lot of things there by himself. Mr. Independence enjoyed that very much. He was a big boy, and didn't need any help. *grin*

At the end of the day he fussed about having to leave, but was out 2 minutes into the ride home! no surprise there.

It was a great day. We took as many precautions as we could and washed hands and used sanitizer a lot, so hopefully he won't catch anything, but he's so strong and doing so well now, we want him to enjoy the Kid Things. He's been begging to go to an amusement park for a while now. 

The Museum is another place he wants to go and we're hoping to make that happen soon too. The Zoo is a given, I'm sure we'll get there this summer. 

I feel spoiled. We're having so much fun and doing so many things, I say my prayers of thanks that we can finally have this time. We think he's earned some special R&R and we're trying hard to make as much of it happen for him as possible.

We sent in his registration for Pre-School for the Fall. So he will be officially attending Nixon Methodist Preschool as of September. Another big milestone for us. We expect some colds and illnesses from this, but we'll deal with them as they come. The doctors are fine with this decision and think he's more than ready for the experinece. 

Bailey our Dog is working out GREAT! We take her for a walk every morning. I push TJ in the stroller and hold Bailey, who needs a little work on leash manners. It's definitely a work out. She sleeps in TJ's room everynight. As soon as we go up for his bath she goes into his room and stays there til he & I go downstairs the next morning. She's a sweetie. TJ LOVES that she sleeps in his room. She is a very active dog and so friendly and gentle we can take her to the palyground with us and have no problems. She listens and comes when she is called, even if she wants to chase a squirrel or go visit the dog walking by.

TJ & I have been planting seeds and they are all coming up everywhere, I was hoping he'd be more interested in it, but I guess he's still alittle young. When we water them he is pretending to put out a fire... I'm sure some of them will make it, regardless of the flood and poking. Ha ha ha!

I hope everyone is having a wonderful Weekend, please remember those heroes who have given their lives for all of us. And as always please remember our Hero, our Donor and his family. 

AND.... give those kids a big hug and be thankful for the little things. God Bless!