Tuesday, May 5, 2015

Still hanging in there

It has been over a week since we were at Primary Children's Hospital. They determined that Ricki was having non-epileptic seizures. The doctors told us the seizures were not dangerous but there was no medications that they could give her to make them stop. The other hard thing is there really was nothing they could do and they didn't know how long they would last. They told us to continue our behavior health appointments and told us to work on some breathing and relaxation techniques with Ricki. It honestly feels that we just have no control and that there are just no great solutions. Ricki's seizures are not quite as severe but there are still quite a few times during the day that they effect her legs and she can't walk. She is amazingly patient as she lays there with her arms and legs jerking around. In fact a lot if the time she will laugh and make jokes. She jokes that it is Pablo that is making her shake. The drs assured her it was a real thing that her body was doing so she didn't feel bad but I think by giving it a name it helps us all cope. Sunday was a little scary...I was washing her hair in the kitchen sink and she passed out. I had to call Rick and have him carry Ricki to her bed...I keep thinking it will get easier but it still breaks my heart when she starts shaking and she just want to hold my hand. One of her therapists that we met with last week thought it would last a couple of weeks...that would be four more days....but it doesn't feel like this will ever go away sometimes. I will be so relieved when it does. But, in the mean time we will enjoy just chilling together, watching movies, and just enjoy having Ricki to hang out with and enjoy her sweet personality. When she gets feeling better I am sure there will come a time that she will be busy and out and about with her friends and I will miss these nights that we have had together!