Mar 2005 | Apr 2005 | May 2005
IV treatment. He was sick today. Once treatment was over he was okay. He does seem to also get a metallic taste in his mouth too. Popsickles help with this. Nurse L continues to be our home health ANGEL! We all love her very much.
June 7, 2005
Dr. V today to have his two month eye evaluation. She is a pediatric Opthamologist. One thing with this disease is that we must watch for Glaucoma and Cataracts. Not only because of the disease, but mostly due to the chemo and prednisone drugs. He already has amblyopia (lazy eye), so I'm very worried about his vision. We've seen this dr. for years now and like her alot. We've been three times since the JDM diagnosis. Today his pressures were elevated to 28 and 30. (normal is 10 -20). Now, we will have to check these in two weeks to see if the pressures are still high and if so, she'll give him drops to prevent nerve damage and glaucoma. Dr. V is worried about his crossing being worse and also he was more farsighted today. We'll be getting new lenses in a couple of weeks.
June 9, 2005
My last day of work at Proctor Home. Brian and I decided that Charlie and Sally need me too much now to be worrying about getting to Proctor. They were great and I loved my job there, but haven't been able to get in three days per week that they hired me for. Charlie was diagnosed the day afer I started at Proctor, so it just was bad timing. I am going to focus on my consulting business and just do this 1-2 days per week for extra income. My consulting business is slowly growing anyway, so it'll be fun for me to do more with this and work at home more. Chris (dad) has great insurance for Charlie and Sally and Brian (step-dad) has wrap around insurance for the kids and I. It's all good and I get to be with my kids who need me. :)
June 10, 2005
One of my best friends from NC came here for support. All my friends from College and Peoria have been so good. My friend Julie, has let us sleep at her house on trips to Chicago and calls me several times per week. My friends in Peoria that I work with are awesome. Even people I don't know - send notes. My family is amazing. Brian's family is amazing and Charlie still loves going to Dad's and likes to get away from it all.
Charlie also had his IV treatment today. He's such a trooper. Sally is acting better and has less behavior issues too since Charlie getting better. We're all feeling "relief".
June 11-12, 2005
Charlie was showing us how he could "kinda" run. WOW! He went swimming with Dad, Michelle, Alyssa and Sally - Had a blast! We do have to watch out with the sun as the disease is photosensitive and also his meds have an impact on his skin too. He needs to wear 30 SPF daily and can only stay out for 30 minutes at the most. He needs to wear shirts, and hats too. This Summer will probably not be too adventurous for us.
June 13, 2005
Nurse L called regarding switching IV's to Thursdays. This will be better for us too. Option Care is a great home health agency. Our nurse is wonderful and who would of thought we'd be going into our fifth month with the need for IV's??? Unbelievable!
June 14, 2005
Aqua Therapy at Easter Seals! That was great! We'll start stretching and ROM therapy.
June 16, 2005
IV treatment today. He tolerated this well. Solumedrol and Methotrexate. She tried to draw two labs, but couldn't get the blood. I told her to forget it as he started crying. We are slightly concerned about elevated blood sugars due to the medications and his family history. We'll have his Dad check him this weekend with his tester.