September 11, 2012

Forever Running After Pigeons

Okay I'm about to drop a big ol' MaMa Drama bomb and it involves my baby. So here it goes and it is long because I have to get it out and only immediate family knows at this point. For those that have met me in real life know I have a spinal disease. My back is curved forward at about 40 degrees, it is caused by a genetic auto immune disease called ankylosing spondylitis. I had symptoms as young as 8 years old with inflammatory joint pains. But that was in the late 70's. There was not a lot known or treatments for the disease and at that point they did not think it affected children or women. They finally diagnosed me in the mid 90's when the gene test was found, I was around 25, but after that many years the damage was done. So when I was pregnant we had genetic counseling and went through a high risk pregnancy doctor for monitoring. We were told it was a 50/50 chance she could get the disease. Fast forward 5 years.... 2 weeks ago after the first week of school CoCo had a runny nose and started to asking me to rub her back because it hurt. At first, I was like, ok she probably is getting the flu and some body aches. Then she said words I never thought I would hear and really truly never wanted to hear from her sweet little lips. She said, "And mommy, I didn't tell you but in the morning my foot hurts really bad." I asked her to point. She points to her heel and up to her toes along the plantar fascia. My heart sank very very deep. I almost stopped breathing completely. As a child, one of my first and worst symptoms was plantar fasciitis in the mornings. I had it so bad and for so many years, they did exploratory surgery on one heel to try and relieve pain. Again I have tried not to panic. Thinking, it is probably new school shoes... etc. I asked her when and why she had not said anything. She said it had started when she stayed with my mom over the summer. But that it usually went away after she watched some cartoons. I happened to be going to see my rheumatologist the week after she told me. My rheumatologist told me to call our pediatrician and get her tested now. She said here in town we have a great pediatric rheumatologist who she went to med school with and that she adores him. We went to our pediatrician, who said because of the family history and the unusual complaints of pain that we could go ahead and order the gene test now and then set up the referral to the ped rheumy. She said she also wanted to test for leukemia, because of the unexplained back pain. Mike took CoCo to get the blood work done this past Saturday. I didn't go. Partly because my heart could not go there. I did not ask how long it would take to get the results. I just don't want to know. I just want her to be that very healthy little 4 pound baby I brought home from the hospital. I just want her to be everything but a disease. I just want her to keep running after pigeons and squealing in water fountains and jumping on the bed and spontaneously dancing just because.
2 days after I wrote this, we found out my baby girl is negative for HLA-B27. I am forever grateful that she did not inherit this disease.