Tuesday, May 19, 2015

MAY 2015.
It has been a year since I last updated this blog. Life goes by and time moves on. 
Jacob is now 16 years old. He has walked this journey of Juvenile arthritis for 11 years now. It is part of his life. As he has gotten older the challenges of being a teen with this disease has been tough. To be honest he is really sick of dealing with everything that this disease has brought. He is sick of doctor appointments. he is sick of medicine that makes him feel awful and most of all he is sick of always being in pain. I can't say I blame him. Being a teen, he is hoping to get a job soon, but he worries that he will be in pain when working. The problem with jobs for teens is that they all seem to require being on your feet for an extended time. He has intense pain in his heels when he stands for long and I am not sure he will be able to do this. We also worry  that sharing his medical condition with a prospective employer will be not help his chances of getting a job.

So what is going on with his JA at the moment? Well he has completed 2 1/2 years of Remicade and Methotrexate therapy combination. His eyes are clear at the moment, off all drops. His joints on the other hand are not doing so well. He still complains of pains here and there. His back, hip, toes, fingers etc. He is supposed to be getting Remicade every four weeks , but he has not been very good with keeping the schedule. There has been some days when he was supposed to go in for his treatment and he has refused to go. Trips to the hospital have been tough for him. What kid wants to go lay in bed for hours in a hospital to receive medication so you can be a kid? After a few appointments missed and the emotional toll this has taken on him and myself, I requested to have his Remicade infusion at home.  The hospital room moved to our home! This past week he had his first infusion at home. It went perfectly! All of the supplies were hand delivered the day before. I can't believe how much stuff came. The Remicade was interesting. It was in 9 small vials. It needed to be mixed with sterile water and infused over 2 1/2 hours. A very nice infusion nurse came and did his treatment. She was over for HOURS. It's still such a long process. He took his premeds, Tylenol and Hydrocortisone, then waited for the numbing cream to work, placing his IV then blood draws, then the med infusion, then finally we had to watch for a reaction for 30 minutes after the infusion. We are relieved all went well at home. Jacob will continue to have the infusions at home as long as needed every four weeks and he will continue to see the eye specialist and rheumatologist every 8 weeks.
Well that's the update for now! PLEASE PRAY FOR A CURE so that the 300,000 children living with this disease can live pain free.