sorting thru a mountain

Today brought a lot of the same stuff as yesterday which becomes more worrisome the longer it occurs. Keyan spent most of the day sleeping or in a glassed eye stare. It takes her a long time to respond to me and she was only able to tolerate 10 minutes of physical therapy before she was sleeping again. She is so weak...I know logically that it could take a very long time for her to regain her strength and where-with-all, but my heart feels like time is standing still. I want my baby back. The longer it goes on, the more I fear the permanency of it. Trying to sort it out is like digging in the sand along the shoreline. The more you dig, the more sand that piles back in. When we try to figure out what is taking place, there are so many dimensions to look at...the infection, the seizure, high fevers, previous neurological changes, post traumatic stress, new meds for the tics, agitations, ect. Any, all, or a combination of these things could be causing what we are seeing. If you change too many things or add too many things it mucks the water up further. For now, we are staying steady on the path we have started down and will let that play out for a few more days.

On a funny note, Paul was able to come up after work and I so needed him to do so. It can get really lonely watching Keyan struggle by myself and making decisions for her without his complete understanding. Anyhow, while he is he, he usually takes over diaper duty and started to change her diaper. I left the room to go and get something and when I walked back in, he had this look on his face of utter disbelief. In the process of changing her, she manged to poop all over him! I held myself together until I got to the nurses station to ask for some clean up supplies and than I laughed. He was so good natured about it...he is a great daddy. After he took a shower and changed into hospital scrubs, he just sat right back down next to Keyan and rubbed her legs through all of the tics. The best part though was that Keyan laughed about it!!! If it takes getting pooped on to make her feel some emotions ,I know Paul would do it over and over again...thanks honey! Unfortunately, right before he left he was holding her on his lap and it happened again...another pair of scrubs and more smiles and he was ready to go! It does get our concern up that she is having such terrible diarrhea. Keyan is very susceptible to a terrible gut infection called c-diff, and we DO NOT NEED THAT on top of everything else. They will collect cultures and test for all of the gut bugs tomorrow..Lord we need that to be negative! Overall, I am learning patience like never before and once again being reminded to be grateful for the small steps she is taking.

One more thing...if you think about it keep my family at home in your thoughts too. Paul, my Mom, and my Dad are doing a great job keeping things together but it is not easy. The kids feel the loss of mommy, and the stress of everyone else. Jamahl is having a hard time and it breaks my heart. Our family has lived in crisis mode now for a solid 9 months and it wasn't easy before that....The separation and worry are so difficult...more than kids should have to deal with. If you happen to be one of the lucky ones to see my kiddos, give them a hug for me....and please take a minute to give your own kids an extra squeeze too!