Treyton's off the PREDISONE for Good!!!

Join me in the Pefect Lab Happy Dance...

Down to Neoral and Vitamin D!

WOO HOO!!!!!

This really applies to any family member of a special child...I thought these were cute and hit close to home, so I am sharing them...ENJOY!

-The transplant office, head nurse, surgeon, emergency pager, and pharmacy are all in your speed dial.

-You know the cafeteria lady in the hospital by her first name.

-You still get butterflies when they call with lab results.

-After 2 stiff necks, you finally start bringing your own pillow to the hospital.

-Your car can make it to the hospital, clinic or lab on auto pilot.

-You think the creator of the portable DVD player should be awarded the Nobel Peace Prize.

-You have so many hospital bracelets you sware you could link them together and wrap them around that giant Christmas tree in Rockefeller Center.

-You've woken up at least once in a cold sweat thinking; "crap, did I forget to give any medicines today?'

-You've never been so obsessed and or concerned with how poop looks in your entire life.

-You wish you would've bought stock Pfizer, the makers of Purell. Because as much money as you've spent on the stuff, it would be nice to make a couple of bucks back.

-You don't know whether to laugh or cry when you see the bills start to roll in... (thank goodness for health insurance!!)

-When you talk about "train tracks" or "road maps" you are not referring to toys or means of navigation, rather the lovely scar on your child's belly.

-You feel fairly confident that you could complete nursing or possibly even medical school with all the knowledge you've obtained.

-You get sooooo tired of answering the same questions over and over.

-You've never been so happy to have cable as when you're sitting in the hospital.

-Your child could sleep through any IV machine and or monitor going off.

-The sounds of all the machines, especially the IV will be engrained in your mind forever.

-You have at least 2 boxes of latex gloves sitting around.

-Your hands are always dry and possibly peeling from all the handwashing.

-You want to curse the makers of Tagaderm, because no matter what you do, that stuff just lingers.

-You have more dosing syringes than you'll ever know what to do with.

-The admissions people at the hospital recognize you.

-You cringe, pick your child up and run in the other direction when a snotty nosed kid comes near your son/daughter. (sorry to all the sick kids out there!!)

It's here! The date we have been waiting for since we were told that the first year was the most critical part of his recovery. He has made it, and passed with flying colors! Treyton has had a picture perfect post-transplant journey...the only complications he has experienced have been a few viral colds and fevers. While those were a bit scary at times because of his compromised immune system, they were nothing compared to the types of issues we know can happen to these special liver kids after this surgery.

We were in Chicago on Thursday for his Anniversary Check-up...it went great! HIs labs continue to be perfect, they are happy with his growth and gain, they say his liver continues to remain very soft and he finally has no palpable spleen! Really the only concern they have that I brought up is the fact that he only has four teeth still. Two top and two bottom, and while the team says that they expect slow dentification in these children due to the hits their bodies take from the pre-transplant disposition, he should have more teeth by now. So they are recommending that we go see the dentist, get their advice, and then proceed. We are thinking some sort of gum cutting surgery is going to be in Treyton's near future...and we are going to try to get it done in Chicago, and that way if we have any concerns, we are right there. To end his check-up, they have gotten rid of his Bactrim and reduced the amount Predisone he takes. He was at .7 ml and now is at .3, we get labs in two weeks, and if he does well, they will stop it completely, and then have labs again in another two weeks. Since he has had no rejection episodes, this is why they are trying to do away with the steroid. It may be unnecessary. So aside from his Vitamin D supplement, and cyclosporine...this is it for meds! It's hard to believe that he came home on nine meds and a vitamin, and now we are down to almost nothing!

I guess I just want to give thanks to God most importantly...He gives and takes away, and I feel so blessed that he wanted Treyton to be here on earth, changing lives and touching hearts. His story has actually been chosen by Children's Memorial to be THE story for their annual fundraiser with COSTCO brand stores, to help raise money for the hospital. That's just amazing! Secondly, I want to thank the next most important person, who without his sacrifice...we don't know what Treyton's fate would have been. Tom Miller shares in Treyton's anniversary as well, one year ago, he risked his life to save our son. It still brings me to tears every time I reflect upon that day, and his willingness to do whatever it took for Treyton. He is a wonderful father, and a true Hero. These two serves as a ture testimony to WHY organ donation is so important! The impact of donation on the recipient and the people who love them is immeasurable. Please be an organ donor.

I want to give thanks to all of our family for their unwavering support, concern, love, time and tears this past year. Without our families, where would we be? I want to thank all of my friends, and church family and the community of Bloomington-Normal for supporting us, and especially praying for us. Prayer is the Greatest gift, and I do believe with my whole being, that one of the reasons for Treyton's smooth sail thus far is because of everyone' faith in the Lord, that He would bless Treyton's family with the strength to help him fight, and also in giving Treyton the strong will to fight for his life too. Treyton the Trooper! Thank you for continuing to read this blog, and check in on our miracle!

Promise to post new pics very soon!
Love to all!

Shannon (Treyton's Mama)

And there's no doubt about that! I looked at the date of my last posting here, and came to the harsh realization that it has been nearly a month! Tomorrow is Mother's Day, and as I sit here tonight in the peace and quiet (the kids are in bed...ahhhh) I reflect for a moment. Last year on Mother's Day, my family and I were in Chicago with Treyton, awaiting the day when he would finally, finally get his life-saving surgery. My daughter was in pre-school, but stayed home that day so she would not have to see the other girls and their mothers at the "Tea Party." My heart was breaking, for many reasons. And as I try to think of what to say next I almost find myself speechless.

I never would have imagined that this past year would be so great and peaceful. Mother's Day this year has a completely different attitude. I am joyful, thankful, and grateful to the most important source of my blessings, my Lord and Savior. He gives and takes away, and I am so humbled that He found Treyton's life as one that should stay here on earth as true testimnoy to His love, mercy and grace. Treyton continues to amaze people and touch everyone he meets with his charm, charizma, and foot long eyelashes. To random people everyday that we see on errands and such, they would never know what the start of his life was like. And that in it's self is Amazing.

Believe me, I am so proud to be his mom, that it takes everything in me NOT to share his story with these everyday passers-by so that they can know the miracle they just met. So my prayer to those who continue to read this blog, even when it is so silent here, is that you have the best Mother's Day whether you are honoring your own mother, or you are the honoree. A mother is the back bone of many lives, and the greatest influence on her family.

HAPPY MOTHER'S DAY!
In honor of my own mother...I try not to forget.
Dee Dee Flies 6/15/52 to 8/19/90

Treyton's one year anniversary approaching...7 days to go!

Woke up for the first day this week fever free!

But he is pretty soggy in the nose, which is no fun for him cause he can't breathe, and no fun for me because I end up with yuckies al over my shirt by the end of the day...

But that's a small price to pay for having it just be a cold! Usually now it will go thru a cycle of nasal to chest congestion, hopefuly not this time.

We'll see.

The website has been so quiet! I suppose we were due for some Treyton news right? Here's the scoop for you...say a prayer for him.
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Treyton has been running a fever since yesterday morning. I woke him up, and he had spiked a fever during the night of between 102-103 (under the arm)...immediately scheduled him an appointment. Ruled out ears, chest, throat...urine cultures came back neg., and we await the blood cultures. (hopefully neg. too) Had CBC done which showed nothing abnormal...(So what the heck is causing the fever right?) Went to work once Tom came home from work, and when I came home, he had broken the fever at 3pm, and went to bed completely normal.

Awoke in the night at 11:30, and was blazing hot again! So I called the GI in Chicago who agreed with me that we should go into the ER just in case. (in the middle of the night? argh!!! you all know how this is!!) So the did a COMPLETE MET. PANEL getting everything, and ofcourse somehow, they miss the GGT (an important liver enzyme). Has to get poked again, and it takes another hour and a half to get those results. BUT having said all of this...there is nothing! going on with his liver, all his labs were beautiful! Thank the Lord!

So now I am just waiting for more symptoms to come like a runny nose or something, because just the fever is really bothering me. (HIs nose is usually sort of stuffy anyway, so that is a tough one.) My mommy instinct tells me it is his teeth coming in. All the doctors/nurses say that the fever won't be this high with teeth, and that's abnormal so it can't be it. (DUH PEOPLE!) Treyton is NOT the typical child...and I also see 3 nobs on either side of his two front teeth that are indicative of teeth coming through. My opinion is that his mouth is MISERABLE.

So, it's my second day with the morning off work watching after little man, BUT I AM SO GLAD IT IS NOTHING LIVER-RELATED!!!! I mean, how could we come this far with nothing happen, and then get to his one year and have him sick? So glad it's just VIRAL!
Thanks for checking in, and for the thoughts and prayers.

Yikes! I hope you were able to get what I was saying! I even had type-os in my apology for my type-os!!!

But hey, that's me! I need to go to bed! lol...thanks for always reading this thing anyway!

SF

Check back for more info.

I believe it's something to the extent of a setup outside the door of Vet's Pkwy WalMart. Possible radio broadcast...sign up to revalidate your donorship (you like my made up word?) Donate to "DOnate Life", that sort of thing, so come out and support this cause. After seing what Treyton went through, how could you not??

I'll probably be there sometime in the afternoon depending on what time the schedule is set for.

Taking with the folks at WJBC again, we are talking about doing another interview for Treyton's one year anniversary coming up on the 18th of May ALREADY!

SO like I said, check back for more definitive details, just wante dot put the thought into your minds.

Thanks,
Shannon (Treyton's Mama, who he now drives completely NUTS!!! Isn't that such a great thing? ALways used to wonder if I was going ot get to say this about him! Life is good and GOd is so great! Singing praise everyday for how fortunate we have been. (sorry ofr any type-os!!!)

Here is a diffrent link to Treyton's online article. I hard through the mill that the link I gave before did't work.

He is right at the top of this page.

Thanks!!

http://www.childrensmemorial.org

(you may have to copy paste it into your browser.)

Chicago went well on Th.
Sono took about an hour, he did relatively well. (Although i have noticed things are not as easy as they used to be before he knew the world around him existed!!)

Got out of sono at 12:45ish and by 1:05 I had a call from hepatology saying it was perfect and they loved what they saw!!! It must have been really good if they only had to look at the results for 15 minutes before they gave us the okay.

Our next appointment will be for his 1 year anniversary in May (15th the appt, 18th the actual day!) Can you believe it? One year already?

Now we just wait for the latest lab level on his cyclosporine. We have been reduced to .4ml X 2 p/day from .5mls. His level was just a tad high, and since he has been doing well...they can tolerate a slightly lower level. I just hope that if this lower dose is okay, and once his body adjusts...we'll start seeing some more teeth. His gums have been prominent, and I can see a couple of teeth that look like they want to come down...so we'll see. (But since the teeth are his only issue at the moment, you don't hear me worrying too much!)

LIFE IS GOOD!!!! SO GOOD! And the spring fever has hit me hard. I am so through with winter. The season of the Rising of Jesus is here, a time for rebirth and reflection. I know it's not for another week yet, but just in case I don't get on for a while...in advance I wish you all a HAPPY EASTER!!!!!
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