Me and My Big Ideas

Wasn't it on Seinfeld that either George or Kramer had big ideas, only to not act on them then later see someone else make it huge with something similar?

I've had a couple of big ideas myself that later made it huge. Really.

Chris gets tired of me telling this one. Maybe because he didn't have imaginary friends like I (& lots of others!) did growing up. Maybe he thinks I should be more embarrassed of this, but I think it's funny. See, when I was little, I used to pretend I led a double life. I'd go to school as Stacey during the week, then change my appearance a bit and travel to California on the weekends to perform and live as the star that I was. My alter ego name was Helena Montgomery - a reference to my grandma's name (Helen), the state of Montana (I liked the way the capital sounded like my grandmother's full name, Helen Montagner) and the lead character of Bewitched (Elizabeth Montgomery), a show I quite liked.

You know where this is going.

What a shocker a couple years ago when Luke started watching the Disney Channel to see a show about Hannah Montana that had like the same exact story line. Imagine me cashing in on this idea rather than Billy Ray! Move over Hannah Montana. Hello Helena Montgomery.

I predicted the future again in a college marketing class. I came up with the idea to extend cereal consumption for Post by creating cereal vending machines. I made a large prototype out of a refrigerator box. You'd select which cereal you wanted then the milk poured into the bowl. The prof was less impressed than I expected, but I still got a decent grade. I'd like find out what that instructor thinks now as I've seen actual vending machines like this from time to time. (I do think the milk comes out in a separate container. Oh well, I would have worked the kinks out.)

So what's on my mind now? There's been a lot in the news lately on airline safety. That along with fuller planes and more luggage stuffed into the cabin has made flying a lot less enjoyable. I used to like it, now I hate it. Most of us can't afford to pay for chartered flights, but I would be willing to pay a bit more to allow an airline to regularly check me out - my background information, my credit info...whatever. IF then it was guaranteed my regular commercial flight was full of law-abiding, clean record passengers like me. Well if not that, something will wind up changing. Airline travel will evolve.

If you are interested in more future trend spotting, check out someone's forecast I've watched for years, Faith Popcorn. She predicted everything from gated communities and virtual socialization to mechanized hugging booths - hmmm, that one hasn't panned out yet has it?

http://www.faithpopcorn.com/ContentFiles/PDF/FPBR%202010%20Predictions.pdf

More big ideas can be found at this site that I like to check out occasionally. It touts "ideas worth spreading." http://www.ted.com/

From here on out, if I come up with anything else really big...you'll be the last to know.

The Sound of Music

Last night Luke and I watched the first part of the Sound of Music. I asked Luke if he wanted me to fast forward during the part where the eldest daughter dances in the gazebo with Rolf while singing "Sixteen Going on Seventeen". It was going on a bit even for me! He said no, "I like beautiful songs like this." Interesting. Not long after that Luke started singing himself and unprovoked bellowed, "I am four going on five." Hilarious!

Christmas!

The Brownings have had the best Christmas ever! The long weekend started with a Mommy & Luke date while daddy worked on his very special Christmas Eve dinner (grilled lamb w/peanut & cilantro sauce...can you say fine dining? Yum!)

Luke and I took a chilly tour of downtown. We started off at the large train display, but Luke found it more fun to roam the large building "mazes". Lots of up and down escalator rides, etc. We took time to dine at the counter at Skyline Chili and even took a special ride in a horse drawn carriage.

Christmas was celebrated at home, then with Chris' family, then with mine. Lots of gifts of course. Luke is so fun to watch open presents. He says he's so glad we get to celebrate Jesus' birthday by getting gifts ourselves! Here he is just bursting with frustration having to wait to open his stocking at Grandma Kay's house, later modeling his new Snuggie!

Mitchie enjoyed the fun too. Cousin Riley has a special way with him, she really gets him to chuckle. So sweet!

Wishing you + yours the very merriest Christmas. Peace, love + joy in 2010.

Extraordinary Measures

John and Aileen Crowley were on top of the world. With a brand-new Harvard Business School degree, three beautiful children, a new house, and a great job, they thought that they had just entered the best years of life. Then doctors diagnosed their two youngest children with Pompe disease, and everything changed.

Fifteen-month-old Megan and five-month-old Patrick were given only months to live. Pompe disease, the Crowleys were told, was so rare that no company had yet developed a medicine to combat it. There was no cure, no treatment--only the gradual degeneration of muscle so that in the end, afflicted children would be unable to walk, eat, or even breathe on their own. It was a nightmare the Crowleys could hardly comprehend.

Based on this real family, a movie comes out January 22. Seems like a triumphant story and I for one will see it, interested in not only seeing kids in chairs on the big screen, but to relate to the mixed feelings of hope, despair and dealing with medical issues.

http://extraordinarymeasuresthemovie.com

http://www.crowleyfamily5.com/index.htm

Eye Doc

Took M to the eye doc today. At first the doc said he saw no difference in his eyesight (boo) then after dilation noticed M turned to look at him when he came in (yea) then really had to fight with M when he directed light into his eyes (yea). M kept trying to push him away (yea). Great to know the doc is seeing improvement just like we are!

Spinal Tap Results

I wasn't expecting results today, but when I checked email from home sure enough a message from the Cleveland Clinic was in my in box. Interesting I just posted something about how Mitchell seems to fit some of the characteristics associated with Mitochondrial Disease, because the letter from the doctor states...

"Spinal fluid analysis is normal for routine studies, lactate, pyruvate, glucose, other amino acids, neurotransmitter amine metabolites, tetrahydrobiopterin, neopterin, 5-methyltetrahydrofolate, & succinyladenosine. Concomitant plasma amino acids and glucose were obtained for comparison prior to performing the LP. A chromatographic peak associated with cases of pyridoxine/folinic acid responsive epilepsy was not seen.

Of note, his blood glycine is slightly elevated as well along with his AST level (a muscle and liver enzyme).

The recently completed evaluation showed moderate elevations in blood and spinal fluid alanine. This finding while not diagnostic, raises the concern of mitochondrial dysfunction."

Additional tests have therefore been recommended to add specificity. Along with blood tests, there was reference to additional muscle biopsy tests - not sure yet if that means testing on tissue already being stored or whether a fresh sample from another surgery is expected. It's likely we'll go back to the Cleveland Clinic for any such work.

Chris asked me what my thoughts were on this. My first reaction was...well at least the trip was worth it. We got some sort of finding that gives us something to go on. But after a brief conversation, it almost seemed like a non-event. We're so used to getting complex, somewhat vague results.

This gives me a good opportunity to let you know Mitchell's actually been doing quite well lately. We are convinced his eyesight has improved. Given enough time, if we are still and quiet with no background noise, we think Mitchell looks at us. He looks, looks away, looks back then away again and then... smiles! It's wonderful!

Furthermore, when he first wakes and we take him from his dark room to the fluorescent lit laundry room where we change his diaper, he now squints just like we do as his eyes adjust to the light. He's also gripping better on occasion. He has stretches when he gets up during the night, but then he goes right back to an all night sleeping rhythm.

I sometimes wonder whether all this is okay to share from a HIPPA perspective. Then I think this is a pretty closed blog and I appreciate knowing there is a community of friends and family out there who are following our little story and appreciate the details right along with us. Bless you all!

Luke's Pre-K Holiday Party

Oh what fun we had today. I visited Luke at lunchtime at his preschool for a holiday party to which parents were invited. The children read gingerbread cookie related stories, decorated gingerbread cookies and sang some songs for us. Lovely!

Mitchell was diagnosed with Mitochondrial Disease here in Cincinnati, then Cleveland Clinic specialists disagreed leaving us uncertain about Mitchell's condition. Nevertheless, we keep tabs on what’s going on in the Mito community because there does seem to be similarities between Mitchell’s symptoms and Mito disorders. Eva, featured in the video around the 5:00 min mark, shows a wee resemblance to Mitchell as she's nonverbal and non-ambulatory. However with Mito, every story seems a little different.

Bowling + Birthdays

...these are among Luke's favorite things. We had both at a friend's Scooby Doo Bowling Birthday Party for their son Adam. Below is what happens when you ask kids to say "bowling" instead of "cheese" when you take their picture!

Caroling Party

Our friends Julie and Ed have a caroling party at Christmastime. Julie and I have known each other since college. We were even roommates for awhile in Clifton (Cincinnati area) post college. She has a great voice and used to work at the Opera so when she gets her friends together to sing...it's no "Silent Night". Here we are singing accompanied by a Cincinnati College of Music pianist on Julie and Ed's new piano:

Bless Chris' heart. Not much of a singer, he hung at the back in the kitchen for some time, then found his way to the patio talking over the fire pit with some of the guys!

Too Many Quotations

I got a kick out of this blog. Sometimes I wonder if I "overuse" quotations! http://www.unnecessaryquotes.com/

Double the Fun

Mitchell had not one, but two holiday parties on Saturday. We invited Grandma Kay and Grandma and Grandpa Browning to come along as we enjoyed holiday hospitality first at the Cincinnati Association for the Blind. There Luke and Mitchell sat on Santa's lap. (Luke was ready, having been waiting to tell Santa his list. At the top, a Wii Star Wars the Clone Wars game. I keep reminding Luke that we don't even have a Wii...yet!) Luke and Grandmas also enjoyed making crafts.








From there we headed to the home Donna Speigel, the serial entrepreneur who founded the Conductive Learning Center, Mitchie's therapy school. We caught up with Mitchell's therapists and enjoyed a wonderful lunch. Grandpa Browning even got to see some of the Bearcats football game! The party wrapped up with a special holiday presentation by the children.

LP at Cleveland Clinic

Mitchie and I are back from our quick trip to Cleveland for his spinal tap, or lumbar puncture, surgery at the Cleveland Clinic. All went well as you see him resting peacefully after the procedure. Everyone at the Clinic was great. I have A LOT of thoughts on how the Clinic exudes its brand in everything they do. If you are interested in that...ask me. I won't bore the rest of you! It's just an unbelievable place - most people refer to it as a city its scale so substantial.

We're to get results on the analysis of his spinal fluid in 2-4 weeks. They are specifically looking to see whether there is neurotransmitter dysfunction, for which medication could be prescribed to help motor abilities.

Another great chance too to see my brother's family as M and I stayed with them Wednesday night - thanks Craig and Carli!

Who's Resilient

Last night I watched “The Grinch that Stole Christmas” with Luke. Don’t you think the best part is when the Whos sing though their Christmas was thought to have been taken from them? Watching that part this year made me hope I would have such a positive response!

You could say the Whos have great attitudes. Or their Who-manity keenly evolved. Of course they understand the TRUE meaning of Christmas.

I see them having resiliency.

When I used to interview – yikes, like 2 decades ago! – I would often describe myself as resilient. I thought it an impressive word. I saw myself as tough. Able to bounce back in the face of adversity. Truth be told, what adversity did I really ever face back then?

This week has been a weighty one concerning Mitchell. First there is anxiety surrounding my taking Mitchell to Cleveland for his spinal tap on Thursday. Not even so much about whether there will be a finding, but managing him not being able to eat for 8 hours and other prep.

Additionally, Chris took Mitchell to see our Cincinnati neurologist. Mitchell is getting older and his weight and abilities are static. (We were certain he had grown, but he is still at 24.5 pounds and now down to the 3rd percentile.) Chris was told at this point any testing we do is nothing more than fishing and not to expect a cause for why Mitchell is the way he is. M's prognosis was discussed which is unclear without any underlying diagnosis.

It’s always sobering to ponder the unknown future. Easy to want to strap yourself up and be…well be resilient.

Lately I've realized there are problems with being too resilient. Emotionally, you may not pause to let yourself really feel.

I don’t cry often. (Too resilient.) Yesterday driving home after debriefing the doctor’s appointment with Chris by phone, I cried. Wasn’t any big reason too – I just finally let myself respond to a trigger and was authentic in my feelings of disappointment surrounding my beautiful, sweet son. Why can’t he be normal??? Why hasn’t a miracle occurred??? I let myself NOT feel guilty about NOT being tough and capable for a moment.

Speaking of being alone, from a spiritual and community standpoint, when you are too resilient, you may become insular and disconnected. Being too self-reliant isn’t how I believe we are created to be.

There are a lot of Whos in Whoville after all.