Tuesday, November 30, 2010

The countdown

Ian is doing great. I purchased a new type of mederma for him that is purple in the tube and then rubs on clear which Ian thinks is pretty cool stuff. I think this may be the last tube we buy. He will always have the scar but I was hoping it would fade a lot more like his first surgery scar has.

At just under 5 1/2, Ian lost his first tooth on Thanksgiving day. He was visited by the tooth fairy and was most excited to find some money under his pillow the next morning. Suprisingly not too much drama with the tooth removal which was all Brett's department.
The countdown is on for Ian's second Liver Day (December 17th). We have so much to be grateful for these last two years and couldn't possibly name them all but please know that if you are reading this, you are a blessing to us.

Sunday, October 31, 2010

Add to my list of things never to be without

So I'd like to add this

to my list of things to never be without as a transplant parent. It is called unisolve and it takes off adhesive painlessly. We used countless of these pads in the hosptial when Ian had his transplant because of all the tape on him from IV's and other tubes. The staff gave us lots when we were discharged and I have slowly been working through our supply (treating them like gold) getting off the tape goo from labs. I just broke down and used the last one this past time for labs. Ian came home with a different type of tape (I call it paper tape) and it is awful stuff to get off. I managed to get it off without an adhesive pad using water and an ice cube but then for days (about 4) goo was left on his arm attracting all sorts of fuzz build up. Which is when I decided to use the last pad and hope that the lab place would let us bring in our own bandaids....which brings me to the some great news that.....

Ian is now on an every month schedule for labs! This is great. We haven't been this far stretched for labs since pre-transplant. We are greatly excited to meet this milestone. So even though I used my last unisolve pad, hopefully I won't be needing them as often any how.

Wednesday, October 6, 2010

Clinic Visit News

Ian had a fabulous clinic visit complete with getting his flu shot. (This is an extra bonus for me as I won't have to take him and wait in the ped's office here for an hour occupying both kiddos!)

He is growing and doing well on all accounts. The staff I think are all smitten by him but who wouldn't be right? He managed to get a special Thomas the Train engine from one of the doctors there. We are touched she remembers Ian so well to know that he adores Thomas.

The big news is that we are cleared for 6 months before needing to head back for clinic visit. This is exciting stuff! He would have been cleared for a year but because the doctors just changed his prograf level and are still keeping an eye on his EBV (viral that is still showing up in low level of his labs) so the team feels safer at having him come back in 6 months. Again, I am thrilled.

And for a bit of history, the end of this month (October 2005) five years ago marks our first ever visit with the CHOA team to get Ian evaluated and listed for transplant.

Tuesday, October 5, 2010

Grounded

Ian and Brett were going to fly today to his clinic appointment but if you can believe it there are NO RENTAL CARS available at the ATL airport for today or tomorrow. So they are now driving instead of flying and I am yet again stocking the DVD wallet with lots of movies for the drive. Thankfully I checked a new Thomas the Train out from the library and have a few other suprises for Ian on the journey. I am hopeful this clinic will be a good visit and our next one won't be four at least 4 months but am really wanting it to be 6 months. I'll post an update on his clinic visit after the return journey.

Monday, September 13, 2010

Great Catch at Camp

This past weekend Ian had the opportunity to go to Camp Second Chance which is set up just for transplant kids and their families. It is through CHOA and located in Rutledge, GA at Twin Lakes. The theme this year was Under the Big Top with all sorts of circus/carnival type events. Just Ian and Brett went this year as our first experience but based on the rave reviews they gave it, I think our whole family will go next year.
Ian had great time doing arts and crafts, learning some drumming skills and participating in the carnival where the jump castle was a big hit. But the biggest highlight and thing that Ian wanted to do while at camp was FISH!!! He chose to fish over paddle boats, swimming, rock wall, etc. It was worth it as he caught a 2lb catchfish on his first cast.
We are so grateful to the many people who make experiences like Camp Second Chance possible and hope that we can pay it forward one day.

Tuesday, September 7, 2010

School Days

Ian is doing well in school thus far. He is enjoying the computer center, science center and rice table. He is suprisingly only one of two kids (by his account) that have lunchboxes and don't purchase lunch. When I asked him if he wanted to purchase, he emphatically said no. He enjoys riding the bus, sweat box that it is and all. Here he is at his desk in school--he is put on the end to have less kids around him and touching his "spot". I LOVE that his teacher thought of that!
He has already missed one day for a cold and there has already been a case of strep in his classroom so we are being vigilant.

He'll have labs again this Monday which means he goes in late. His next clinic visit is in October and we are hopeful that we won't have to go back for six months. His liver numbers are holding solid even with the weaning off of the prednisone so that is good.

Tuesday, August 17, 2010

I'm a Kindergartener


Ian started Kindergarten today and had a great day. His teacher, Mrs. Slusser, is aware of Ian's medical needs and seems like she will be proactive about things. She has dealt with some servere allergy kids previously and so has some background about wiping things down, precautions, etc.

Ian will be dropped off in the morning because of his prograf medication. His bus would come to get him at 6:42AM which is crazy! His prograf time is 8am so to keep it as close to that time as possible (without having it given at school which is not our first choice) we're driving him in and squirting the med in his mouth has he gets out of the car.

Ian just had labs yesterday but will be missing school for labs, clinic, illness (his own or classmates) etc. He can only miss 10 days of school even with an excuse so we are working with school administrators to make sure that Ian isn't penalized for his liver transplant.

He liked the different centers in the class room giving high kudos for the computer center, rice table and reading area (although he hasn't found a Thomas the Train book yet). I look forward to good things this school year and know that Ian will be a great Kindergarten Boy!