Wednesday, Jan. 8, to hell and back

Just a quick Cassie report. She has a little cough and sniffles kindly passed on by her sister, so she started the day a little touchy. Not a good beginning. At our usual half-way stop off point, McD's, she was just fine, not interested in eating, but fine. Okay all the way to Portland, a side trip to Costco with a new pretty princess dress for Cassie, and on to Shriners Hospital, but as soon as we got in the elevator to go up from the parking garage she knew where we were, and started a slow spiral toward the worst melt-down she has ever had. We checked in and set her on the floor to play. A toddler about 1-1/2 walked over to her, she started crying and said, she's scaring me. Tess took her to the bathroom to change her diaper and calm her. She alternated between fussing and laughing, then started crying in the hallway. One of the office aids asked her what her name was and she replied, baby. I am the baby. The gal took her to find a new toy. She got two horses with a bucket and brush for their soft tails and manes. She played okay for a little while. Then we had to go get her weighed and measured. For the first time ever, she let the aide measure her head without crying. Tess and I were both thinking, wow, maybe things will be okay. She had to take her to another room or weight and height. Weighing went fine, and she had gained 4 pounds since last appt, Yippee!! Then when they tried to measure her height, she started hysterically crying. Tess carried her back into the exam room and she got even more upset. She was sobbing so hard after the nurse practitioner came in that she threw up on Tess. We had to do the nurse interview over a screaming Cassie. They said we will leave you alone for a little while so she can calm down before the doctor comes in. When the medical personnel had left she wanted to get down on the floor, was there about 30 seconds and wanted back up, all the while still crying. Tess told her you have to calm yourself down Cassie, so I am going to make you a bed to lie down and pretend you are sleeping. She laid her shawl on the exam table and Cassie laid down on her tummy and pretended to go to sleep and whimpered for at least 5-10 minutes. She calmed down and eventually sat up. The doctor came in and she was just fine. But, the doctor is a man, and for some reason they can get her to cooperate better than any women except, Tess, me and her Aunt Kori. She almost started to cry when he started his exam, but Tess said, “Cassie, he wants to see your skin.” She is totally fascinated with the fact that she can feel the skin on her legs, but that her legs can’t feel her touching them like her arms and her belly can. He had her pick her up and let her legs dangle so he could see how her hips are doing. He says she will have to have surgery at some point on her hips, and ankles to release the muscles so thy don’t contract so much. He says for now it isn’t bothering her or causing her problems with sitting or using her wheelchair so it is nothing to worry. He says a lot of times they can wait until 7 or 8 sometimes even a little older, but sometimes 5 or 6. She will be four May 1, so we shall see. We don’t have to go back for a year unless she has a problem. We still have our quarterly appts. At Doernbecher (the children’s hospital next to Shriners), where she attends Spina Bifida clinics and sees speech, occupational therapists, pediatrician, urology, neurosurgeons, social workers, physical therapy, etc. all on one day. I am done for another day, another night, and due for some much needed rest and sleep after 5 hours drive time, a trip to the fabric store and out for dinner on the way home in addition to the time at the hospital. Whew! We are just glad we are done for another year.