Journey Beyond Survival

We raised $5597 at FirstGiving.com We raised $25 on Facebook with Paypal Ryan and Deb raised $1000 for a new website . And? That puts us over the top! Even when we factor in any fees that Paypal, Firstgiving, or Ryan incur due to credit card use fees, we are over. So. What does that mean? We are on our way! At Midwest Assistance Dogs, they are excited about training a dog for Chickadee. It's a unique situation that has never been done before, so I appreciate all of you being supportive and open minded about it. We are still discovering the ways that Chickadee can be benefited by her Service Dog. So, I'm working with the director. He is reviewing our life, and bouncing ideas off me as to what will work. What does that mean? I don't have a specific doggie, or date yet. It depends on what is realistic for the dog to learn, and for Chickadee/I to be able to help it execute. Basically it's gonna take time, research and experimentation. Usually? i...

First of all, to truly understand in context, I must explain to you in Gory detail. Yesterday was a very difficult day. Traveling is always hard. For both of us. But yesterday, the doctor's visit was horrifying. Not only was there an unusual amount of detail-mineral and vitamin absorption, bowel and swallowing habits, regressions, physical strengths, Momma's mental stamina, potty training-but there was also a problem. Chickadee needed me to hold her the entire afternoon and evening after her first day at the new preschool. I worried that she might be sick. But there was no fever. Just Mommaness. Then while I was on the treadmill Chickadee woke up yesterday and had a pretty bad diaper. Mr. Survival deserves a reward. Josie at YumYucky told me Tuesday about the Barfing Boat. And it's a good thing. We were at the Doctor's office. Chickadee was stripped down to her diaper, but was wearing my Christmas present I made her. This one: It caught all of it...

things we do on the potty loves the bus siblings adore her Today is a traveling day. Again. Unexpectedly, we got a call from the Developmental Pediatrician yesterday, saying we could have an appointment today. The DP is the fabulous lady who coordinates all of Chickadee's specialized care. It's her job to know that the Pulmonary recommendations do not interfere with the Neurological, or the Gastroenterologist, Primary Care, or Rett Specialist. Since we got the G-tube placed, we must be on some high priority list. Which is great, because it's time for her regular battery of tests to be run. Swallow study to see if she can still eat what she's eating by mouth, or gotten better or worse. EEG to see if she's having seizures, EKG to monitor for a heart thing that kinda goes with Rett Syndrome, and maybe (I hope I hope I hope not) a sleep study where they stuff her nose full of 6 monitors, attach EEG electrodes to her head, Put on chest and toe and fi...

*photo by pmarkham So, here I sit on the edge of the bathtub.  At 4:44 AM no less, just as I have been all week.  We've graduated to Chickadee using Netflix on my iPhone, and me grabbing my laptop to write a post.  It's the only time it's going to get done anyway.  She hates when I'm asking her in ever increasing moments, "Are you done?  Hit mommy's hand if you're done."  Half the time I swear she hits my hands or looks in my eyes as requested simply to get me to shut up.  Ten minutes later she needs a new diaper, but at least mommy's out of her face! It could be worse, yesterday she did it at 2:30 AM.  I've been an insomniac this week and hadn't gotten to sleep  until the depths of 11:00 PM  in spite of being in bed at 8:30 PM .  So, yesterday was rotten, because 4 o'clock seems to be an hour Chickadee loves dearly and woke early to see it too.   All this is to say that I feel guilty for missing my workout yesterday. ...