Tuesday, April 28, 2009

OB apt

Last night I watched one of my favorite shows, "Mystery Diagnosis" and to my amazement, the first episode had been promoted as a girl who's body was eating itself away from the inside. It was a young girl, 15, in North Carolina, who was playing soccer, in the heat, and ended up having rhabdomyalisis, (the breakdown of the muscle tissue that causes severe pain and cramps and inmobility), and myoglobinuria, (the urin is coffee-color because the kidneys are working overtime trying to filter proteins from the urine who have this dark pigment color). I knew, once they said her CK (Creatine Kinase)- which is the amount of muscle tissue in the bloodstream- count was 200,000 (normal is b\t 50-250), she had it. She had the same autosomial recessive, metabolic myopathy my brother and I have-CPT type II. She is an only child and this diagnosis was recent, in 2007. She had one other episode that hospitalized her, where her CK reached 50,000, before her pediatrician referred her to a geneticist at North Carolina Children's Hospital, where it was confirmed. I was so excited! They finally had it on there!!! And the coolest thing, is that it was a girl! This myopathy is predominantly in males. Anyway, I looked up her family, and found her dad is a lawyer- how weird is that my dad is also a lawyer! I emailed him and am very anxious to hear back. She is the age when I was diagnosed, in 1995, so having someone who can tell her how she might physically feel as she gets older, and plans to have a family, might be exciting for her.

Ok for my OB apt update. Dr Ramsey checked her heartbeat and it sounded great. Went over that I've had no female problems, but have been having these horrible, stinkin' headaches daily for about 2 weeks. He gave me something to take for that. He asked me a favor, which I was thrilled to oblige. He has another patient who is about my age who recently lost twins at 18 weeks. He said that when he saw her last, it was like seeing a version of me-but I was more depressed than she, (imagine that). He said she was in denial and he suggested she get involved in a support group, (which are really not available locally as consistent as most moms who've recently experienced a loss can need it) and also told her that he would check with me about being a contact for her since she might prefer the one-on-one. I was thrilled. I told him any patients he thought I might relate, I'd love to talk to. We talked about his up and coming leave, (I'm gonna cry!!!) at the end of May. He said he'd be in town on June the 9th and would come by just to see me, with his kids! I thought that was so nice. So the plan is to do an ultrasound next week, and plan to see the sex of this baby-which we know is a girl!!! So prayer warriors, continue to pray as we approach the 23rd and 26 week period, when Tobi and Layah came, that these will be just dates on a calendar and they will be very boring and regular days for me and our family! That's it for now.

Faithfully His,


1 comment:

  1. Hi, Mika! Just wanted to drop you a note to tell you that I am praying for you. Dave and I saw Tobi at Field Day. He's doing great. Isn't God awesome? He looked like he was having a great time!!!!