Just wanted to let everyone know, they've moved the date for TJ's next biopsy/catheterization up.

We had been scheduled for Monday 11/17, but it has been moved to this coming Monday, 11/10.

They will be checking for the usual rejection and checking overall heart function. We expect and hope that all will be well, he hasn't been doing any funny medicine or heart things lately.

They will also be checking his blood work again. We've been having some issues with his immune system. SOme of the levels are low, expected to be low after the chemo drug Retuximab that we gave in Feb, to get rid of the PTLD. But they would have thought these particular numbers to come up by now.

We'll see. He's been doing so good that hold that image and feeling in my mind and heart. He has such a life and vitality around him. It's a beautiful thing to see and feel. All parents must feel this around their kids, but for me so very special. I

I want all of you to do 2 things today...

1. Find that one thing that your child, or another child you know does today that makes you smile and hold it in your memory. Give those kids an extra hug and when they drive you nuts, remember this image.

2. THIS IS VERY IMPORTANT - 

please visit Baby Aidan's site today.

http://www.carepages.com/carepages/AidenCarroll

He's been struggling the last couple days. He and his parents need some extra prayers. I'm asking all of TJ's supporters to please take Aidan into their hearts and give his parents the love that all of you have shown us.

Carepages requires you to make a user name and password to view their site, don't let this discourage you. Post a emssage and put a virtual gift with it. We're using the hand holding under "encouragement"

Thank all of you for all you do and for all your prayers. I'll post asap about Mondays results, prayers and believe that TJ is healthy and God is taking care of him.

Much Love and BLessings,

Lori

We were called yesterday, his potassium did come down, all the way from 6.2 to 4.9. So it was definitely food causing that to spike up. We'll have to watch a little closer moving forward so we don't let it happen again.

His bicarb was down again, it's the first time it was below 20 in a long time. We're not sure why that was. It could be a lab error or a sample error, or it could just be. I'm not panicking yet, I'll wait till after the next set of labs. 

When will his next set be? We're not sure. I should get a call tonight or tomorrow letting me know. I thin knext week, but he is scheduled for a heart catheterization on November 17, so they may wait until then. We'll have to see.

No news is usually good news around these parts. I'm sorry for not posting sooner and more frequent.

This turned out to be along post, so go refill your coffee now, I'll wait. <grin>

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.

So there are so many more things I could babble and ramble on about. He really is such a delightful boy. He's very loving funny. He does things all the time just to try and make you laugh, of course it works.

I will try to add some pics soon. Thank you to everyone who continues to post and follow us. It helps us to know we aren't alone, times like these are good, but unfortunately we know how fast that can change. Knowing that you are all with us helps us to stay strong through it all.

Love, Blessings, and Faith to you all,

Lori

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.

I think we may have made it through without extra blood work or a hospital visit YEAH!!!

TJ had his cold rebound on him this weekend. He started running a fever of 102.7 and it pretty much stayed there regardless of what we did. The pediatrician found nothing wrong with him, they even did a chest x-ray to be sure it wasn't pneumonia. 

Last night he went to bed with a temp of 102.5, when he woke up this morning he was normal. Just like that his fever broke over night. He's been bouncing off the walls and a ball of energy all day.

I can tell you I've been more than paranoid about the whole thing. I think I drove our Coordinator a little batty, but God love that woman, she talked me down every day. LOL!

I'm hoping tomorrow is as good as today was. And then I'm going to hope that this weekend is good too, and then I can really get down to business...

TJ's Birthday !!! 

followed closely by Halloween. He says he wants to be Bob the Builder, surprise surprise!

He is a little chatter box anymore and says the cutest darn things. He is too funny. His imagination is running wild and he has specific loves, dinosaurs are pretty much at the top of that list right now. I wish I could capture him in all his cuteness and put him on here for you all to see and hear. He is a delight.

Randy & I are both finally over our colds. I'm adding a couple more students to my schedule and may even have a couple students at the house. Randy is still finishing more projects than we could ever imagine here at the house.

The House is still settling in. I'm hoping Randy is in the "hanging" frame of mind this weekend and maybe we can get some pictures and shelves up on the walls. Each day it starts feeling more and more like home. Each it day it sinks in more and more how lucky we are and blessed we've been.

Baby Aidan is continuing to get stronger and we continue to pray for his continued healing. He still has a ways to go to finish his recovery but it feels like he's getting stronger and some things are showing signs of improvement. 

Much Love to all, God Bless,

Lori

Let me just say, being without internet for over a week has left me with a sense of concern. I rely on the internet for WAAAAY too much. Friends, banking, friends, research, friends, directions, you know everything! I'm going to have to de-cyberize my life a little bit. I had no idea it had gotten that out of hand, LOL!

On to important things, How's TJ?

Well, as Karen reported, we had a great biopsy. A very mild 1A, almost a 0. They do nothing to treat a 1A, they assume even if you have a 0 that you're really a 1A anyways, they just missed missed the spots. So this is great news. The doctor's exact words were, "TJ responded very quickly and effectively to his treatment". Yeah TJ!!!!

They have continued to "Tweak" his medicine dose to try and stabilize his levels. We think we've gotten there, or at least pretty close. He can now go 2 weeks before his next blood draw. He'll go the week of the 13th, his birthday week.

His LFT's were a little up, not as high as before they dropped, but up a little. However, he came down with a bad cold the day after his biopsy and blood work. Some viruses can cause your liver numbers to go a little wacky, so I'm holding hope that's the cause and NOT that they are going back up.

We have stopped his probiotic. There was an issue with the Liver transplant patients and their probiotics, so they decided to hold off on TJ's f or a little bit and see what happens.

We are finally back to an even level with his GI issues too. We are back to the weaning schedule of Imodium and he's doing very well with it.

We are also weaning his Pepcid dose back and trying to see how he'll do without it. Pepcid is common for causing diarrhea, so if he can be off it, I want him off it. So far so good over the last week. We'll continue to taper off this week. If he does need it he'll have some reflux issues, heartburn.

TJ was very kind and shared his cold with Mommy and Daddy, wasn't that swell of him! I had to cancel one of my nights of lessons this week, my throat was pretty bad for 2 days. Today it seems better. He's been doing OK throughout his cold. He had 3 bad days, one with a fever, but since has been good. He has a runny nose and an occaisional cough, but activity and appetite are fine.

It's been cold and wet here so we've been keeping him inside. He's getting a little stir crazy but hopefully next week he'll be well enough to let go out again. 

His Physical Therapy is now over. He has improved incredibly. We are looking into Gymnastics as a possible follow up to it. His Physical Therapist thought he'd do very well at tumbling and gymnastics, and it would continue to help him with his weak areas. 

Our new home is great. We are still settling, we don't have pictures up and all our stuff here or put away yet, but it is our house and we all love it. Even TJ is starting to want to stay, that says a lot. 

He's sleeping great in his big boy bed. He sleeps pretty much through the night and doesn't scream bloody murder when he wakes up anymore. He gets himself out of bed comes into our room or down stairs depending on where we are. He always greets me with a "Good Morning Mommy", I love that. My heart melts everytime he says it.

Potty training continues, he's doing well and wearing pants and underwear for the most part of every day. I do put a diaper on him when he's tired and fighting his nap, it's the time he has the most accidents. I figure he's too tired to really focus well. But other than those times, he's good. Even staying dry for a couple hours when he sleeps. That impresses me.

Baby Aidan has been showing some signs of healing and improving. Please keep that little boy in your thoughts and prayers.

One last important thing - 

THANK YOU FOR ALL YOUR SUPPORT, TJ's CAMPAIGN HIT THE $75,000 mark in time for the grant. As Tara said, we barely made it, every donation really does count, even $10 and $20.

We will continue to support all fundraising efforts. My personal goal was to have $300,000 raised before his next transplant. We guesstimate 15 years for that. So we are 1/4 of the way there already. We have 14 years to raise the rest. 

I worry so much about his future. The thought that he may not be able to have his medicine or treatments because his medical coverage doesn't coverit  and we can't afford, it makes my stomach flip. I can't imagine, it hurts too much. So we have to raise money and be prepared for the what if's. 

Someone told me not to think about that right now and I just smiled and dropped it. I have to worry about that right now, if I didn't prepare for it what kind of parents would we be? We make decisions based on what we know will inevitiably have to happen. Yes, it may be 25 years intead of 10 or 220, but still the inevitiability is there. They can't stop the chronic rejection disease. 

So a HUGE THANK YOU to everyone for helping us reach our first bar, because we raised $75,000 and we receive the grants, we actually raised...

$82,500!! HOLY COW That's incredible. You are all Incredible!

God Bless everyone,

Lori

Just wanted to let everyone know TJ's back up recovering from his biopsy/catheterization. They said that everything looked good and we'll know tomorrow about rejection. Hopefully the treatment last week did it's job and we'll be OK this week.

We've still been struggling to get the anti-rejection/immuno-suppressant drug at the right level. This time we've been high, so while that's not great on the EBV & PTLD front, if there was still rejection these higher levels would help to treat them. If there's a bright side to have "off" levels I guess that's it.

I still am without internet at our house, we should have it next week. I will try to post or have someone else post tomorrow to let everyone know what the docs have said.

They are re-checking his Liver function again too. Fingers crossed it has continued to improve. If so it will be assumed it's the antibiotic they've taken him off. They will put him back on it and retest liver function, if the function numbers elevate again, they will know for sure that it's the antibiotic. 

The new house is good. Still settling in. TJ says he doesn't like it and wants to go back to Pap Pap's. We know that's because it's what he's used to. He really enjoys running around in the extra room we have. He loves his "magic sandbox" that's out in the yard. It's a boat and he goes on adventures in it. 

He is sleeping in his new toddler "Big Boy" bed and doing very well. He's had 3 really good nights, 2 eh, ones. He isn't getting out of bed or falling out of bed and he is enjoying his new bedtime routine. We read stories before bed now. Before with the crib it was hard to sit next him or the crib, now I can sit next to the bed and read to him. Dumbo is our favorite at the moment.

He has a new love to add to the obsession with tools, Cars, and Bob the Builder. He now loves The Land Before Time, Dinosaurs. We have the tenth and eleventh installment and that's all he has watched for the last 3 days. Yes you read that right T H R E E Days. Mommy & Daddy are really missing Bob, Thomas, and CAillou at this point, LOL!

They are getting ready to send us home, so I've got to go. But wnated to let you all know that he's still doing well and keep lots of prayers coming for the results of blood work and biopsy. Prayers for his body to keep the PTLD and EBV away too would be good!

Update on baby Aidan, God is Good, he's been improving over the last couple days, keep him in your thoughts and prayers as well.

Much Love to you all God Bless,

Lori

SOrry I haven't posted since Monday. TJ is doing fine, same as he was before the hospitalization. We're still struggling a bit to get his immuno-supressant level right. It keeps dropping then shooting up high. Once his belly gets steady again I think we'll have an easier time of it, unfortunately this is not the best for us to that.

We've been moving into our new house. We've got Living Room, Piano Room, and Kitchen pretty much set. We're working on Bedrooms today and hopefully will be sleeping there tonight.

TJ has a new "Big Boy" toddler bed. He proabably could have gone into a twin size, but with all the GI issues we continue to have, we didn't want to ruin a mattress. He is VERY excited about his big boy bed. We'll see how he sleeps in it tonight.

There is no internet yet at the house, so I'll be offline for a little while. 

We have a biopsy again this Friday, they will be rechecking TJ for rejection, please pray that the treatment worked and that they find little to no rejection. If they do, we'll know on Saturday, I imagine the treatment will be the same as this last time. I think they would try the steroids one more time before jumping to something else, but I'm no doctor. I just pretend to be :) LOL!

Here's the latest we know about TJ's campaign - I posted this in the guestbook, but I'm not sure everyone saw it.

The amazing people in Erie raised $7400 at the Benefit, a huge THANK YOU! And round of applause to Rich, Jen, The M-80's and all the people involved that made that night possible.

The most recent balance from Karen is $66,118.

Add to that the $7400 and TJ's account is at $73,518!!

It's really close to his $75,000 Grant level. As Karen said, the deadline is September 26th.

 COTA gives grants for the first year for every $25,000 a campaign raises. TJ has earned 2 - $2,500 grants so far. If he hits the $75,000 mark, he will receive a third $2,500 grant. Our deadline is this week, Friday, September 26.

I will post again as soon as I get internet. In the meantime I will have friends post in the guest book like we've done before.

Prayers please for Friday. Also Prayers for Baby Aidan. He's not doing very well. The doctors have been having some very serious talks with Joe & Julie (Aidan's mom & dad). These are talks that we were lucky and never had to have. So please pray for a miracle for that family, pray that healing comes swift and soon, he needs a change to happen today!

God Bless All, and much Love,

Lori

Yeah! We were just given the word, as soon as TJ's IV med is done, we're outta here! WHOOO HOO!!!

We were worrying a little bit because the FK level, his immuno-suppressant level is still not coming up the way they'd like. But this really does reinforce what we've all been thinking. His GI is much better and recovering and this is a by-product of his normal GI system. 

So I'm off to make phone calls to make sure we can get out of here ASAP.