We were able to get out of the hospital for christmas. We went to Boone and stayed in a cabin with Justin's family. My mom, dad and sister were able to drive up on Christmas day and spent the night. We are so happy both of our families were able to be with us. We had a good time and glad we didn't spend Piper's first Christmas in the hospital. We picked out a tree from a tree farm and decorated it with popcorn and home made ornaments. We went for a hike, went skiing at Beech mt, played games and tried to relax as much as possible. Justin's white elephant gift he picked out was lottery tickets...no duds this year, he won $500!! He said, "awesome, I can pay off some hospital bills!!"
Piper was put on steroids at Emory to try and stop the spasms. The initial doses worked well and decreased her seizures from 200+ to about 50 a day. We got our hopes up that this was going to be the medicine that finally worked. Unfortunately they have crept back up to 200 a day again. Disappointed is an understatement. I tried to enjoy our time away as much as possible but it's hard to do so when most of your time is spent counting seizures and making sure she gets all of her four medications on time. The hardest part is the seizures really bother her now which is new. She screams and screams before, during and after she has them now. This is absolutely heart wrenching. I could handle them when she didn't seem affected but now it kills me to even watch her knowing how much it makes her cry. My patience and strength are wearing thin. She is not able to sleep through the night anymore because the seizures wake her up every 2 hours. So we get about an hour of sleep at a time. I am physically and emotionally exhausted. I can't imagine how she feels. She just can't catch a break.
We called our neurologist at Emory today and he is going to call us tomorrow to let us know what he wants to do next. We are expecting to be admitted back in the hospital this week. We are living out of suitcases at this point. Our home has become the place we are together whether that is a hospital or somewhere else. It's not getting any easier because we all are so frustrated we can't stand it. We continue to pray for her seizures to stop. I don't know how much more Justin and I can take. There is nothing more devastating than watching your baby hurt and not be able to make them feel better, especially when it is pretty much the majority of every day. Please pray that we get a second wind.
The only thing that gets us through at this point is laughter and prayer. Laughing truly is the best medicine. We like to surround ourselves with people who are uplifting and light hearted. If we are around things that add to our stress and anxiety we quickly shut those things out. We are at the maximum stress possible and don't need any unnecessary stressors. Piper picks up on people's emotions so if you are calm and peaceful she will be too. She also picks up on crying, so we don't cry around her.
We also have a hard time right now being "normal" and doing
things like we used to. Going out in public is not the same because we don't like dealing with people looking at her while she is having seizures. It just hurts when people don't understand and we get tired of explaining it. So if we are not our usual social selves don't take it personally.
I will keep you updated this week as we travel back to Emory for our next steps.
Hope everyone had a great holiday!