It's July Already?

Wow....where did June go? Sorry for not posting any updates recently! Coby is still doing very well!! :-)

Last week Coby’s leflunomide blood level came back below the therapeutic range, so we had to increase his leflunomide dose from 5 mg once a day to 10 mg once a day. We will have to repeat another leflunomide blood level 20 to 23 hours after a pill is given in 30 days. There is some chance 3 leflunomide blood levels will have to be done to get the dose correct. This test requires I send (overnight) Coby's plasma to Dr. Sisson in Boston, along with a check for $270. It's a very expensive test & hopefully we won't need to do THREE! Coby will be on this medication for about a year & a half. Once we get to the therapeutic range we won't need to continue to check his blood levels.

Dr. Sisson also wants us to start cytarabine injections (another immunosuppressant). It is given as four injections 12 hours apart over a two day period once a month. It will be the same two days every month - we will start this Saturday & give the shots every 10th & 11th of the month. We will also need to have a CBC done once a month 3 to 5 days before the injections are given each month with the results sent to Dr. Sisson. Coby will be receiving these injections for about 1 year.

Coby is also still receiving the Prednisone and Zonisamide. He is eating great & is now at 7.6 pounds - that's a 1 pound weight gain since his diagnosis. He looks much better!

Right now I'm trying to train Coby to adapt to his new airline carrier. He only flew once & that was when he was 9 weeks old when we were bringing him back to Milwaukee from San Antonio. He did great back then, but now....he's much more difficult & anxious...lol. We are planning on attending the AKK meeting in Claremont, CA - we want everyone who has been a great support to meet Coby & learn about his disease. We had $1500 of airfare credit that we needed to use by the end of the year & we certainly didn't think we'd be able to use it up by then. But...now we can put that credit to good use! I just hope Coby doesn't cause an uproar on the flights!! :-)