I'm so sorry to not be posting... we have been busy doing so many normal kid/family things. I can't believe how busy I am or how tired I am at the end of the day.
I updated the spring 2009 Photo Album... http://www.cotafortjw.com/node/494
We've had some adventures at the ER - one involving a mystery fever.... which was a blessing because we caught his immuno-suppressent level being too low, if we hadn't gone it would've been 3 weeks until they knew. That would've been rejection without a doubt. But the fever made us go to the hospital where they checked and caught it!
The second ER trip was 3 days later when TJ made the comment to me "Mommy, money all gone" which prompted me to ask "What money" to which he answered "The money in my mouth" AAAAAGGGGHHHHH!!!!! Yes, you guessed it, the boy swallowed a penny. 1 trip to the ER, X-Ray, and a lot of laughs later, he's fine... no problems or complications from that either. Although it is now story #2 about things he ate.
He had a biopsy, it was FANTASTIC! 0 -1A rejection which is as about as good as it gets.
Bloodwork has been stable, we still have the liver issues, but.... they are much lower and stable.
He's gotten so big. 45 pounds and 41 inches tall... no more toddler clothes, boys section now.
He is pedaling a little bike, it has the training wheels on it. He is running more and more normal everyday, and is sitting with his legs stretched out and Indian style to play. These were things that last fall he couldn't do.
Our Imodium is down to once a week now, in fact as I type this, I can't tell you when the last time I gave it to him. The only diet restrictions we have now are the Low Potassium, because his level is always really high. That's from his medicine.
and speaking of medicine, we are on 2 different meds, that's it!!! Only 3 doses in an entire day. Can you believe it! We used to have 14 meds and I think 22 different doses during the day.
He is completely potty trained with the exception of night time, and that's getting better, he will wake himself up some nights to go use the potty. Still have a bottle, but slowly getting away from that too.
Easter was wonderful. Life has been wonderful. He's doing so many things that when he was in the hospital I'd dream of him doing. I cry every other day or so. Just seeing him laughing and enjoying himself is enough to put me into tears, and a quick prayer of gratitude. What a blessing he is, I consider us so lucky.
I'd love to write about all the things we've been doing in more detail... I always mean to post, but I just run out of time. Like now, he's itchin to go out and play.
TARA - THANK YOU!!!! thank you for your continued donations, and for posting your message in the guestbook. There is continued Fund raising going on for TJ, the events section is soon to be updated with the summer events.
We are always looking towards his next transplant and wanting to be financially prepared to support him for it. The fundraising going on now goes to help until that time and ultimately for that time in his life. I've had people say things like, think positive... we are, a second transplant is an absolute. It's a fact he will need one.
LINDA - THANK YOU!!!!! thank you for all your posts while I've been neglecting my duties, I love seeing everyone's posts and Linda, I love that you post even if I haven't.
To everyone reading this, thank you for staying with us and for following TJ's story. I say it a lot, but be sure to tell your loved one You Love Them! and Hug Those Kids... and look for the little treasures in every day.
Love all of you! God Bless!