Wednesday, September 15, 2010
9:00 p.m 9/14/10 Ryder is fasting8:00 a.m 9/15/10 Went to the children’s hospital with Ryder today to get more blood work. It took 1 hour to check in and confirm insurance. Our insurance wasn’t open yet so the check in lady couldn’t verify the already approved payment for tests.9:00 Followed the yellow turtles to the radiology floor like the admissions lady told us to do (2nd floor) We spent 55 minutes waiting for the nurses to bring us back for the blood test. They were learning how to take the blood test that Ryder needed (these test are so rare that they needed to be sure how to conduct them). Even though it was frustrating having a very hungry baby wait that long—I was okay with it because we have already been called back for more test because the nurses didn’t do it right 1st---so better right then a do-over During that time I copied the tests they were doing so I knew later—They tested for Krabble Disease, metachromatic leukodystrophy, phytanic acid screen for peroxisomal disorders and, plasma very long chain fatty acids. These test will be sent to Kennedy Krieger/ Medical Genetics Lab/Bayor College of Medicine. I was told it will be 1 to 2 weeks for results.10:00 We were ready for the blood test. In my recent experience of surgeries and getting blood drawn—it was easier after a warm cloth was applied for a few minutes to help w/collection. I asked for some warm blankets to heat up withdrawal sites. Ryder was such a trooper---He was poked several times in his right arm with no results. He was poked in his left arm collecting about 4 vials of blood, but it slowed down. He was poked again in his right wrist and another 7 vials of blood More testing, more Waiting and Honesty from Denisewere collected. He cried/screamed and wiggled for about 10 minutes and ended up falling asleep for the last 3 vials taken.1:30 Noah, Ryder and I had an appointment at WIC for some help with nutritional supplements/food while I’m out of work. Ryder got pricked again—testing his iron levels. They came back low—I was thinking because he was fasting and had all that blood drawn earlier, but the WIC nurse disagreed—who knows? Noah was fine. We did qualify and it will help with food for the next several months.When I got home I researched Krabbles Disease—Please don’t let this be the diagnosis. I read up on it and found a lot of similarities including MRI, development, vomiting, irritability as a little baby, & nystagmus. I had Les look at the info and he didn’t see the similarities—hope he is right. I am sick after researching this today---PLEASE DON”T LET THIS BE THE CASE!!!!! I’m still waiting for the “woops he’s okay” news!!!MY (DENISE) Honesty and point of view right nowI spoke with my mom a few days ago about a blog I recently posted. I thanked Blue Cross Blue Shield for the speedy approval. Mom thought I should write a note thanking God and all the prayers for Ryder. I told her I wasn’t ready for that yet. I believe in God. I believe in the power of prayer for myself. I feel that prayer gives me strength and prayer of others builds a community around me and our family to be strong. I am having a hard time believing prayer deals out miracles or a cure. I love my family. I feel a great connection with God, I don’t blame my God for any of this, but I am still dealing and sorting out my feelings about that. I am open to any conversation and understanding from friends or family…please comment for me. Please don’t remain anonoumys—leave your name. And please understand I am confused right now and would love to think about others opinions.