Apr 2005 | May 2005 | Jun 2005
He was doing well during my birthday party. Cough continues to be persistant. It seems like ever since the intubat, he's had a chronic cough. IV treatment today was Zantac and Solu-Medrol. Tutor also came today. His grandparents agree to stay with him once a week on Tuesdays so I can work. My new job has been patient thus far since I just started it on February 1. Insurance decided to cover his medical costs now too. Hallelujah, I don't have to worry about that at least!
March 2, 2005
Back to see Dr. Pachman at Children's Memorial. She wants to see us weekly due to cough and weakness in neck and trunk. Dr. Pachman has decided to try an antibiotic this time--Zithromax. She also found he has thrush down throat. She gave us Nystatin for this.. Pysical staus remains much the same. Yells for help to use the stairs. Must hold his hand when walking outdoors so he doesn't fall. He can only walk short distances, then must rest. Has chronic pain when walking or using muscles still. Muscles do not hurt when at rest. PT/OT evaluation done today--little change in range of motion--still a lot of pain. She now recommends IV Zantac and IV Solu-Medrol 3 times per week.
March 4, 2005
IV Zantac and Solu-Medrol given by our health care nurse. She has been with us since the beginning of February and is becoming part of the familyas she is here so frequently. She is so good with Charlie and he actually looks forward to her being to "the one to stick the needle in the port." She has been a blessing!
March 5 and 6, 2005
Brian took me out of town this weekend to get away from the stress. Charlie and Sally wanted to go to their dad's house, so we went off to have some time alone. We went to see live music and some theater (Blue Man Group). I felt normal again for a short time, but I felt guilty not being with Charlie too. It's very hard to let him out of my sight as I want to protect him from allthe harm of our society. I worry something will happen to him all the time. I definitely have more of an appreciation for my children, husband, family, friends, and God. Charlie's mood seemd good and his cough seems better.
March 7, 2005
One thing I haven't mentioned is all of the support and prayers we have been getting. Charlie gets cards, gifts, and calls from people we don't even know. The people who work with my sister at State Farm's Corporate Headquartters in Bloomington, IL have been collecting money for things to surprise Charlie. I guess Charlie's situation was forwarded to many employees. One vice-president has given my sister time off to come with us on our trips to see Dr. Pachman in Chicago so we don't have to travel alone each week. I have friends from about five or six differentchurches who have Charlie on prayer lists. My new place of employment, Proctor Endowment Home in Peoria has been so wonderful and patient. My parents and my niece come over to help watch him. His teacher, Mrs. G, and principal at Germantown Hills Elementary have been so great to keep in touch and have his classmates send him letters to "cheer up." God is good even when things get rotten!
March 9, 2005
Arrived at Children's Memorial Day Hospital for IV treatments. Dr. Pachman is concerned about the IG level being too low, therefore IVIG treatments are ordered along with his Zantac, Solu-Medrol, and Methotrexate--in other words, hours of IVs today. That was a long exhausting experience for Steph, Charlie, and I. Aunt Steph is traveling with us to Chicago today. Dr. Pachman saw us at 6:30 p.m.--what a long day. Dr. Pachnman is pleased that Charlie's cough is completely gone! His mood is good and we are calling it "the disease of laughter." Charlie is so funny and accepts this dsease and all that goes with it so well. I'm proud of him--his strength keeps me strong too. Dr. Pachman says we can wait two weeks before we come back next time--yea!
March 11, 2005
His current treatments are Zantac and Solu-Medrol IVs three times per week. He also gets Methotrexate IVs on Wednesdays. He seems a little bit better at this point. His mood remains good--he is accepting of his situation. We are all becoming accustomed to a new lifestyle--Nurse L coming for IV treaments, the tutor here daily, depending on family to be here more often, and not being able to work as I normally do. Having to see Charlie through this has turned Brian's and my world around. Thank God for finding Dr. Pachman and her expertise with this! We are hopeful Charlie can start going back uphill.
March 15, 2005
He is coming up the stairs the past two days again--alone!! We haven't seen him this strong since we started seeing the original symptoms in early January (knock on wood!). He is still getting IVs of Zantac and Solu-Medrol three times per week and IV Methotrexate every Wednesday when at home. He takes oral Prednisone (20 mg), and Zantac on the days with no IV treatments. We take Vitamin D, a multi-vitamin with folic acid and calcium, and Nystatin every day.
March 20, 2005
Went up the stairs by himself every day this past week. His mood is good and more apt to try things--less complaints of pain too. I think we are definitely turning a corner with this disease--Thank God!
March 23, 2005
Back to Chicago for Labs and IV treatments. IVIG given due to lowered Immunoglobulin levels in his Labs. He got IVIG, Solu-Medrol and Methotrexate today. Dr. Pachman is optimistic about his condition. Charlie seemed more peppy at this visit and actually is talking to the Dr and joking with her today. PT/OT evaluations show slight improvement in his Range of Motion. His mood is great! He is very hungry and putting on weight, not to mention has the "moon" face and puffy belly.