Listing

We made the trip to Atlanta to list Ian for liver transplant 6 years ago this week in October. We've come a long way since that Halloween in 2005 from my little monster so jaundiced with your liver disease

to my strong brave knight in 2011.

Thank you donor family for your selflessness!

Camp

This weekend we went to Camp Twin Lakes for the annual Camp Second Chance Family Weekend. It is a camp for transplant kids and their families. The place is amazing and has everything from mini golf, paddle boats, a zip line, rock wall, etc. AND can fit the medicial needs of transplant kids.

This was Ian's second year going and the theme was Beach Party. Ian's favorite part of the weekend was fishing part probably because he caught a fish!!!

First Grade

Ian was ready for first grade with his new spiky hair and backpack. He had a great first day and we think his teacher is wonderful. We expect great things this year!

Pirates

These are some pictures of Ian's pirate themed birthday party this past Saturday. Argggh!

Six

Can't believe my sweet little boy isn't so little anymore as he turned 6 on Monday!!! Happy Birthday Ian and I hope there are many many more to come.

A good deal on yellow

Whose are mellow fellow all dressed in yellow?

Ian's class had yellow field day t-shirts. Here Ian is getting ready to do the batton race.
And his T-ball team, the Pirates, have yellow shirts too.

We are hoping that the summer reading program shirt will be blue or orange!

Great Clinic Visit

Ian had a great clinic visit at CHOA this last week. We don't have to go back to clinic for one year and have labs only every four weeks instead of the every two weeks. We are thrilled and feel very blessed. Doctor Romero was even the clinic doctor this last time which made Ian's day.
We also went to the Transplant Night at the Braves on Thursday while we were "in town". Ian ate the chick-fil-A this time and I got him cotton candy even. We only made it to the third inning but it was enough for Ian to still be talking about the game constantly.
Great trip to Atlanta and one we won't be repeating (hopefully) for a year!

Next Week

Next week we journey to Atlanta for a regular clinic visit as well as the "Night out with the Braves" game. We'll do labs there in Atlanta. We just had a prograf level change and so far no sleep interruption problems and I am hopeful that we will avoid those this time. I am also hopeful that we are very close to Ian switching over to a prograf pill instead of a suspension. I'll post pictures of our trip next week.

I'm great

I can't really complain that I haven't had much to update Ian's blog about. He had a round of flu but we managed to avoid going to the hospital thankfully. He is doing well in school (had a great first report card) and is learning to ride his bike quite well. Today we did a box tops page for his school as they are having a contest right now. He does a great job counting out the box tops for each sheet and then we tape them together.

We continue to work on swallowing the tic tacs so he can transition to a pill form of prograf. He is close but not quite there yet.

New Bike

Ian wanted a new bike, complete with a bell, for Christmas and that is what Santa brought! He had his first spin on it on Christmas day and since then we have been doing daily "rides" (aka up and down our sidewalk). He doesn't like going over manhole covers and has fallen off a couple of times but I am proud that he gets back up each time.

Second Liver Day

It's Ian's liver day today and we'll celebrate with cake tomorrow when Grandma and Grandpa (one set) can come. Ian is doing well as a 5 year old in Kindergarten. He likes reading, using his imagination and eating lots of snacks. This is him bundled up for school in the morning.

We've hit some important milestones in two years:

Labs only once a month

One med twice daily

Clinic every six months

Thank you to all who have helped us get to this point and especially the donor family who made this all possible.

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.

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.

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.

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.

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.

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.

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!

Clinic Visit

Ian had a great clinic visit last week. He has been having a few of his liver enzyme numbers creep up a bit so some other tests have been ordered. We are currently waiting for those results and they should be back any day.

I met with the school principal about Ian's medical needs. It was a very good meeting and I feel better about sending him off. I really appreciate the time that the principal took to meet with me. We'll meet his school teacher in about two weeks. I am excited about his first day of school. Right now we are role playing different things that he may encounter for school and his favorite so far has been the lunch sack. He is thrilled with opening it and finding what is inside. It has been a great teaching moment about nutrition for us.

We ordered a new ID band a something special to start the school year. He has a red and blue truck band, space themed band and he choose this time a......

football band. I guess all those Virginia Tech football games that Brett and I watch are making an impact.

I'm 5 today

Ian turned 5 today and was all smiles! He got a set of golf clubs (kid size) and he is practicing putting in our family room. Our little man is growing up so fast--where has the time gone?