As you may have heard, we are home! We were finally released from PCH on Wednesday March 17th - St. Patrick's Day! We are hoping for more than luck...we are hoping to help Kinzie start healing and to feel safe at home rather than being poked and prodded at the hospital. So far, pretty good. We were released basically because the hospital had done all that they can do for her at this point. Her UTI was gone and we still can not find anymore info regarding her unique movements so home we went.

I am trying to keep her to a schedule and run a household with a two year old but her schedules are rarely together or on time. I have to cathe her every 6 hours to alleviate the urine retention and feed her every 3-4 hours or when she decides she is hungry, and remember morning meds vs. evening meds. Since home, Kinzie has actually not done any of her head turning/facial droops that she did in the hospital. however, she does a different one that is just as scary for us. She gets rigid everywhere and frozen like that for seconds and at the same time thrusts her tongue out over and over. I know they sound like seizures but 8 EEGs told us they are not. So we wait and pray that they are not huring her. I'm hoping it's just part of the neurological irritability that she has and that her brain is figuring out how to root when hungry. Don't know.

She has also had a couple random days of wanting to eat but not able to keep it down. Then we go back to a couple normal days of eating and keeping it down. In short, we can't seem to get a routine yet. Every day is different and lots different.

We are currently headed back to the valley on April 6th for urology, neurology, and GI follow-ups as well as the urodynamic testing that we are hoping will explain the sudden onset of the urine retention.

I know I am way behind on pics so I will get to that soon. Just wanted to let you know that we are home and doing good so far. We saw the pediatrician soon after getting home and she is in the 54% for weight and 44% for height. We are still modifiying her sodium supplement as her levels remain a little low, which means 2 pokes so far to test her levels in her blood. It continually amazes me how resilient she is but I also have to remind myself that I would sleep as much as she does if I'd had the start she did. We hope to get her more awake in the next few weeks. Hopefully our appointments with Occupational Therapy will help.