Doctor Visit

Ian has another ear infection---growl! He is taking his antibiotics like a champ. Hopefully they will kick it on the first try this time. He has had a virus of some sort too so we have been doing some breathing treatments as well.

We were finally able to get the H1N1 vaccine for Ian. Our doctors office didn't have it for a long time. the transplant center had initally told us not to have any of us get it as they didn't feel comfortable with it yet and then about two weeks ago they called and said they had changed their position on it and to get it. Ian did really well with the shot--no tears even.

We are gearing up for Ian's first Liver Day in about a month :) We'll have a cake in celebration and I am trying to decide if I should make it in the shape of a liver????? Probably not; we'll just opt for green frosting in honor of liver awareness color.

Twinkie Time

Ian had labs today and our customary meeting at the Kangaroo yielded a new twist on things.....a twinkie for great behavior during labs instead of the usual root beer and rice krispie. It was a first time for the twinkies and it was a hit. I never thought that I would be "one of those parents" bribing their kid with treats, but alas I have succumbed. Here's to the sugary goodness of a Twinkie making tears a non-issue in the all too frequent lab routine that is our life. Next time we will have to get some milk too!

All Fired Up...

Ian is in preschool this year going three days a week. He loves it. Today the kids got to go on a "field trip". A fire engine came to the preschool and the kids got to climb all over it, etc. They got pretend firehats and everything. Ian was very excited as what little boy wouldn't be. He did tell me that he didn't get to pretend to drive it as "the wheel was very dirty". (I am guessing that his preschool teacher was looking out for him and not wanting him to touch it--Score one for the teacher!!!)

Ian is doing much better with speech therapy and for a reward when he is done he would like.....yep a pizza party and a thomas engine. He is facinated with the engine ID engines and is pulling for one of those or the express coaches.

We are back on an every two week lab schedule as his prograf dose had to change. They lowered it to help some of his viral levels come down. Hopefully that will help. He gets a root beer as a reward for labs and if he is exceptionally good a root beer and a rice krispie treat. And I thought I wouldn't bribe my children :) We really feel blessed at how well he handles things and how well he is doing post transplant.

He Did It!

Ian has passed his Occupational Therapy. He hit all of his milestones about 2 months early as of last Thursday. I suspected we might be done early but not this early. Way to go Ian!!! We've worked really hard on cutting and drawing and writing and shapes, etc. We got pizza as a reward that night. I am so proud of him!!!!!

Cleared for Six Months

Ian had a regular clinic visit this past week where we got some of the best news in a while...drumroll please.....he is doing so well that we are cleared for 6 months before we need to head back for our next clinic visit. This is huge. We were hoping to be cleared until December but now we won't have to go until March 2010. So exciting!

His therapy is coming along nicely and the OT thinks we may be discharged sooner than orginally anticipated which is wonderful. Ian has really come a long way. We work every day on something like cutting, drawing shapes, coloring, anything to build those hand mucles that atrophied b/c of his liver disease. He thinks it is great fun to do playdoh time and hasn't figured it out yet that it is actually OT time :)

Breathing Treatments

Ian is getting breathing treatments every four hours round the clock to help get more air flowing. He is a doing a great job (probably b/c I let him watch an extra cartoon while he sits still to do it). He can even squeeze the med into the nebulizer himself and get it all strapped on. Go fighter pilot Ian. We should only need to do this for another day or two and then only as needed.

ER

Last night was a long night as we were at the ER. Yesterday Ian had been unable to keep anything down and that is one of the "flagged" symptoms that hte transplant team has told us to call them about. We called the team and were advised to take Ian to the ER based on his symptoms.

Brett went with Ian while I stayed with Livy. They had a battery of tests including a chest x-ray, blood work, flu swab, etc. Everything for his liver numbers in the labs came back normal which was a huge relief. That at least meant that we were not likely battling a rejection episode. Chest xray negative for pneumonia and flu swab negative as well meaning that what he has has been ruled a respiratory infection. Treatment is to use the neubulizer round the clock to help open his air ways so he isn't struggling to breathe.

Today has been much better for Ian in terms of less coughing, less labored breathing, and energy. Hopefully after a good night of rest he will be even better tomorrow. The doctor has OKed him to go back to preschool when he feels up to it so we'll see when that is.

We are so relieved that it isn't his liver directly although he likely contracted this as his immune system is weakened from the transplant and it will take a while for him to be fully back to himself for the same reason. I think Brett and I ran through a million scenarios of what it could be, etc. I have already raised an eyebrow at the suspicious timing of starting preschool and coming down ill--could be very very random but still. It just means I need to step up my guard even more.

Thank you to all who prayed for us. It helped immensely specifically that Brett and I could funciton on so little sleep.