Journey Beyond Survival

Today is my day over at The Peanut Gallery Speaks .  It kind of snuck up on me, with everything else going on.  Speaking of, if you are interested in doing a guest post for us, give me a shout.  In the comments or email me at journey (dot) beyond (dot) survival @ gmail (dot) com. It's a place for people who can't stop writing even more than they can't stop snitching on the treats in the cupboard calling their name.  Or breathing.  Think it's not you? Try me.  Betcha I'll love it! Follow me on over, because I made myself snicker while writing.   C'mon .  Don't leave a girl snorting at her own wise cracks all by herself!

You probably heard Daddy and I talking on the way down to the Childrens' Hospital.  Daddy was discouraged.  Mommy was exhausted and scared. We talked about how sometimes people tell us, "God gave you this because you're strong enough to handle it".  You heard us laughing. I told Daddy, "I feel like the past six months have been the hardest ever.  But the thing is, I feel like I've been able to say that for the past three years."  Daddy let it hang in the air, ripening like a bulging piece of fruit. "Yeah."  He said rubbing the back of his neck, "That's the thing.  It keeps getting worse and worse." But instead of crying we did something entirely different.  After a pause, we looked at each other and busted up laughing.  It felt so good to laugh. We stayed in the hospital. And stayed and stayed.  Your poor little tummy was on strike.  Apparently six weeks of barely getting over one thing before starting into something ...

Almost Home. #allbetter

No 'burping' with g-tube No anti-nausea medicine No vomiting Tolerating feeds every 3 hours Tolerating THREE ounces every feed [goal is 5 1/2 ounces every 2 1/2 hours] SHE POOPED Mr. Survival is headed home to t ake care of our other two chiclets via bus as we speak.  Chickadee is on a pump to feed her.  It's nice and steady and slow.  Which apparently makes all the difference in the world.  We'll be taking one home with us. For the first time I can actually see the end of this visit.  It may be late afternoon today, but I can imagine going home tomorrow. -- JourneyBeyondSurvival

Just a quick note to say:  Chickadee has ileus .  We've been at the Children's hospital for two nights.  I'm considering indentured servitude to this hospital.  Or maybe just to the ER doc who looked at us for 5 min. and then said, "Yeah, I'm pretty sure she has this thing called ileus.  Which is when your gut goes to sleep basically.  In children like this with gut motility problems, being sick  like that [back to back three times with only four or five well days] can just overwhelm the intestines.  The virus/bacteria can hang out there and not get cleared away because they don't have the ability to push out everything and clear it away." Five minutes people.  Versus three and a half hours at the Smalltown ER and leaving with a 'clean bill of health.'  Adding in the three and a half hour drive and ZERO tests, this Children's hospital is winning hands down.  Mr. Survival saw a construction site across the street for condos, and he s...

I've never been to the ER before and felt it was a complete waste of time. Hospitals are not somewhere I like to go.  I avoid them at all costs.  But, Thursday morning Chickadee had what might be called an anxiety attack.  For an hour.  Or, it could be that the "Parkinson's Shake" that can go along with Rett Syndrome is now on Chickadee's symptom list. Lastly, it could be a seizure. One of the Rett girl blog s I read had circumstances that sounded a lot like my Chickadee's.  She had been started on seizure meds after an illness, and her parents wanted to make sure that is was seizures, as the meds had been prescribed without capturing the seizure for clinical diagnosis. Seizure medications, while life and brain saving, can be devastating with their side-effects.  Chickadee used to be on Dopamax  Topamax following an irregular EEG.  Then Dr.  Khwaja   pointed out that most Rett children have an abnormal EEG by the time ...

What does it take to be happy? Even less, what does it take to be satisfied? When is the planned date of satisfaction? Is it tied to some kind of a size? When the sized twelves are off the shelf is that happiness? Size zero? What happens when healthy doesn't jive with that? Healthy. It seems that healthy is something that is a treasure worth digging for. But so many aspects of healthy don't seem to come together neatly. Especially when average is not good enough. There are choices to be made. Choices have been made. One life cannot possibly accommodate all the achievements to be made. One life cannot possibly be healthy in all ways either. Think about it. Between deliberate relaxation, intense exercise, work, play, families, blogging, twitter, facebook, church, commenting, homework, and food there are just to many balls to drop. Which are most important? At what point is pants size no longer a license for self disgust? When does it become okay to exis...

1. It's not my job to make anybody happy I can merely provide the tools they decide how to implement them 'It' is not my 'fault' 2. Sometimes to be 'nice' I have to be 'mean' there are natural consequences smarting off to me causes a loss of privileges depriving me of my personal time makes me nasty detachment from situations makes me nicer later 3. I need a schedule vague feelings of being imposed upon are hovering in my attitude I hate grocery shopping I avoid anything that leads up to grocery shopping (cooking, eating produce, meal planning) It's high time I wanted to play with my kids Blogging needs to be disciplined more desperately than my 5 year old hiding under the table 4. I want to redefine what makes me happy. what makes you happy lately?

Do you remember that whole fundraising doggie thing? Well, last Wednesday night, we had a wonderful outing. We all piled in the ole minivan. Chickadee was grumpy. She's not sleeping well since that sleeping study terrorized her. I crossed my fingers and hoped she wouldn't scream at everyone. Including the guests of honor. We were on pins and needles. We were invited to help the Trainer choose a dog. She brought four dogs. Two of whom are suited perfectly to Miss Chickadee. Beansprout is going through a rough time. I think he would have stowed them all away in the back of the van. I checked twice to make sure he didn't. I wish that we could get him one just for him. But. The boy is earning himself a guinea pig. Mr. Survival loved one named Ace. I love Mikala. The trainer won't tell us yet which one she's getting. She's got to see how each dog responds to the training. We keep talking up the positive attributes of the other dog to each o...

After every test comes a result. In high school my favorite test was one with high marks and no special attention from the teacher. Why? It meant I did my job, did it well, and did it myself. Being a middle child, I've found that the best way for me to get along is to skate under the radar. I could get pretty much anything I wanted if I just waited until everyone around me was fighting over something. Then while they were distracted by each other, I could sneak the very thing they all wanted. They'd blame each other later too. Chickadee doesn't follow my example. Come to think of it, none of my children do. Too bad. But Chickadee often seems to demand everyone's full attention. The sleep study we did before? I called the doctor for the results. The nurse called me back quite concerned. That's never a good sign. Medical professionals are trained to calm worried parents down. So when she started reading to me over the phone, "Sleep disrupt...

Mr. Survival and I had an awesome hot date last night. Can you believe he got creative?  I know.  I can't either.  Not because he isn't creative.  No, just because we live in a 2 1/2 horse town and we've eaten in every restaurant at least two times.  Even the really crappy ones.  We don't even eat out that often. It's just hard to be a creative dater when the biggest Friday night attraction is Target. But last night, Mr. Survival had a brilliant flash of genius.  It's cold here.  Like "high of 13 degrees" cold.  The kids have had two hour delays twice this week.  Yup.  Solely for wind chill factors and frostbite possibilities in bus stop waiting times. So, we don't really want to be dashing in and out of the car.  Opening the door makes the inside of my nose start to constrict as it all freezes in there.  The first year I lived here the winter was like this.  I remember being shocked at seeing a pedestrian in...

Sometimes between the time that we talked last my life has taken a quick detour. The Children's Hospital that knows us by name called Friday afternoon with an opportunity.  There'd been a cancelation in an important test Chickadee needs every year.  So, of course we said yes. It saves us a trip since we have another appointment today anyway.  We spent Sunday holed up in an awesome $35 steal of an awesome hotel.  I watched HGTV because I've been deprived of it for three years. Now, we'll go to Dr. Happy Poop. If you haven't already seen it on Facebook, I put a video on my post today over at the Peanut Gallery .  Meanwhile, enjoy the torture from last year... Thank you for donating for Chickadee's service dog. Tweet

Mr. Survival is home. When I wrote about the three kids and I all being sick and not being able to do anything?  Yeah.  That was why.  We literally ate cereal for three days straight with a few things like an apple or two thrown in for their ease of use.  It was hard and scary. But, I'm also closer to my kids than I have been in a long time.  Lithium, or psychosis, or my scarred brain has made it really hard for me to do all the cozy mothering I used to.  My sensory system is jacked up higher, and it was already hard for me to handle things like the pressure from a sweet little bottom.  Especially one that is boney, and moves non-stop.  Poor kids.  We do the best we can around it.  This week has been awesome in helping me overcome that. Not easily replicable, but good to know. Mr. Survival made it home just in time for the "Blizzard of 2011" [heard in and echo chamber in your heads] to sweep in and cocoon us with 12-18 inches of...