So slow!

Today seemed to pass painfully slow. Keyan once again had trouble sleeping last night so we are both exhausted. It seems that the accumulation of body tics throughout the day is too much by evening and she can't take it any more. She cries out of frustration, because she is in pain, and because it is so scary not to be in control of her own body. Pain medicine is not working anymore and it feels so helpless.

Despite being so tired, she manged thru her daily therapy sessions and worked really hard on sitting up. She was able to sit unassisted for about a minute and than I kept her upright for several minutes longer supporting her trunk. Her cousin, baby Lucy, brought her a book that has simple counting and she enjoyed reading it several times today. It is good practice just holding the book and Keyan LOVES to count so we are trying to use everything that we can think of to encourage her to keep trying. Her tongue and cheeks are in constant motion so it is very difficult to form words. Although her speech is blurred somewhat she is trying to use one and two word phrases but gets frustrated when I can't understand her. I am really working on my lip reading skills but they are not coming fast enough.

At this point it has been decided that we will only be treating the infection for a total of 10 days after the first negative blood culture which we got I believe last Friday. She is having so many other issues that they want to get rid of the antibiotics sooner rather than later. Obviously the biggest risk to that is there is a very high risk of reinfection after the drugs are stopped especially because she has a PICC line in. I have mixed feelings about this but it really is a risk either way so I am leaving the decision in the hands of the very intelligent infectious disease doctors. I have to give up some control right?

I think the most unbelievable part of this whole mess is that I have been down some of these roads before. Do you know how long we worked to teach Keyan to sit? I am a pro at helping her learn to bring both hands to mid-line and reaching past that. We spent years working on muscle control around her mouth, reminding her to use her "helping hand", and encouraging her past the point of tears to keep trying. All of these are things that I thought we were so far beyond. Never would I have imagined that out of the blue, we would be trying desperately to reconnect her brain pathways. And quite honestly, I think it is more difficult the second time around because you know what you have lost. This seems like utter craziness. Don't get me wrong, we are seeing very tiny improvements and we are focusing on those, but the desperation to return Keyan back to HER normal is such a driving force. My feeling swing on the pendulum from hope and determination, to fear and longing. It is draining both mentally and physically, but I am so grateful to be able to sit next to her minute after minute and feel privileged to be the one to sooth her fears, calm her nerves, and fight this battle right along with her. She has always taught us so much and even in sickness finds ways to remind us of how lucky we are to be her parents.