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Suchitra and I flew to Minnesota on Wednesday after having a ball at the 11th Timko Family Reunion in Cannon Beach, Oregon.  We are so lucky to have such a cool family that has been reuniting either in the West or Midwest every three years from all over the country since 1984.  Spending time with family is pretty much Suchitra's favorite thing to do, so it was a blissful four days and difficult to say goodbye.  We are excited that the 2016 reunion will be held at Lake Okoboji, Iowa, not far from the farmlands of southern Minnesota where the family began in 1895 when John and Anna Timko, both immigrants from Czechoslovakia, got married.  Over the next 25 years they had 11 children, eight of whom survived to adulthood, the youngest one of which was my grandma, Philomine Timko Goracke.  The reunion is for the descendants of all of those eight children to get together to catch up, eat a lot, have a good time, and try not to get kicked out of our hotel rooms.  We used to send my grandma out in her nightie to placate the hotel security guards, but sadly she is no longer with us so we have to keep the noise down a little more than we otherwise would.

Monday's sandcastle competition - note Suchitra with the official judges, probably trying to influence their votes.

Our travel here on Wednesday was somewhat eventful in that when we checked in for our flight, Frontier informed us that the flight had been cancelled but they were able to re-route us so that we would still get to Minneapolis that night, but not till midnight.  Instead of flying through Denver we would go to Seattle on Alaska Airlines and on to Minneapolis via Sun Country Airlines.  I was a little dubious about trusting Sun Country Airlines to take us between two very non-sunny northern cities, but they did a fine job.  Suchitra is not a fan of last-minute changes and uncertainty, so I had to do quite a bit of soothing and encouraging.  I also shelled out for a fancy dinner at Anthony's Fish House in the Seattle airport with the beautiful enormous floor-to-ceiling windows.

This is right before she read the menu and picked out London Broil for dinner.  She is such an avid little gourmet carnivore.

So we didn't get to our hotel that night until almost 1 am, but at least we made it!  I have to mention how well she did walking through the airports - we didn't bring her wheelchair along, we only used airport wheelchairs a little bit, and she walked the rest.  Her endurance has improved markedly from a year ago.  She is able to walk much further with less fatigue.  About a month ago she walked all the way to a park near our house and then back for a total of 1.2 miles!  I was really amazed by that.  Her balance and stability are still quite poor and she falls a lot, especially when distracted or rushing, but SDR wasn't expected to change that very much.  The biggest change, of course, is that her legs are much more flexible and relaxed.  After a lot of hard work in physical therapy, this has led to her being able to climb and descend stairs extremely well, and she also has been able to dress and undress herself every day.  This wasn't possible before the surgery because her legs were so tight.  It has been a huge improvement for both of us!


Since her selective dorsal rhizotomy surgery last fall, we returned to Gillette once in March of this year.  At that time we met with Dr. Novacheck and Dr. Ward, both of whom were on the team that recommended SDR for Suchitra back in June 2012.  In March they confirmed that she should have orthopedic surgery to correct the misaligned bones that resulted from her years of spasticity.  We scheduled the surgery for today, July 26, 2013.

We arrived a day early so she could do another gait lab, which was a repeat of the testing she had done in June 2012 that gave the doctors the information they needed to decide whether she would benefit from SDR.  The gait lab involves a lot of measurements, as well as being hooked up to electrodes and then videotaped while walking back and forth, so they can study her gait.  It makes a computer image that is just like the images they use to create video games or digital animation for movies.  Also the floor is loaded with sensors that transmit information about how hard and where her feet strike the ground.  Then they do an oxygen test that measures her oxygen use at rest and while walking.  The whole thing takes 2-1/2 hours and she was pretty tired out by the end.  We ate lunch and chilled for a while after that.  We also paid a visit to the rehab unit where we spent five weeks last fall after her SDR.  We saw quite a few of the nurses who had taken care of her before so she was super happy about that.

Then we met with Dr. Novacheck, the orthopedic surgeon, to get his final recommendations.  He explained that he felt she should have three specific procedures.  One is a derotation of both her femurs.  Currently her femurs (the long thigh bone) are rotated inward.  In fact, you can kind of see in the picture below how her knees are turning in.  They will make an incision high up on the side of each hip, cut the bone, turn it, and insert a plate and screws to hold it in its new place.  Second, they will go into both of her feet through the heels and insert extra bone to lengthen and re-orient one of the bones in her mid-foot.  This will straighten out her feet and restore her arch (she is totally flat-footed now), giving her better stability.  Finally, they will go into the backs of each calf muscle and lengthen the superficial upper muscle which is still tight as a result of the former spasticity.  Because they do these separate procedures all during the same surgery, the whole thing is called SEMLS, for Single Event Multi Level Surgery.

The combination of these three procedures should result in better alignment all the way down her legs.  When she walks, you can see that her legs turn inward and sometimes her feet trip over each other.  That should decrease.  Currently, with her femurs out of alignment, her hip muscles and knee muscles cannot be strong at the same time.  So with femurs in the proper place, those muscles will get stronger and her walking will definitely improve.  Also, with the foot lengthening and arch restoration, she should have some improvement in her balance and she should be able to pick up her feet better than she does now - she drags her toes along the ground quite a bit.  Dr. Novacheck said that with these tweaks at the upper and lower ends of her legs, and of course further physical therapy, his hope is that her entire gait will become more consistent and stable.

I thought it was interesting that even though her hamstrings are still tight, he does not want to lengthen those muscles during this surgery.  He thinks that when her femurs are derotated, she will lose a little length in those bones, which will give the hamstrings a little room to catch up lengthwise.  Also, the other improvements may make a difference in her hamstrings.  He doesn't want to over-correct and then cause problems that wouldn't have been there otherwise.  I appreciate this conservative approach.

I forgot to ask him about the gait lab results but I did ask him this morning.  He said that the biggest difference is in how much her knees are able to bend when she walks.  They actually hyper-extend a bit, but this surgery should correct that.  Surprisingly, her oxygen usage was not much better than before SDR.  I thought we would see a gain there, since it really seems like she has better stamina than before.

We went swimming in the hotel pool and hot tub last night and had Thai food delivered to the room.  She slept really well and woke up with a positive attitude this morning as you can see by the smile on her face:

We came back to the hospital at 7 am this morning and she went into surgery at 8:30 am.  Before surgery she got to put on the gown that has a little hole in the side where they pump in warm air through a tube.  Nice.

We also spoke with the anesthesiologist who discussed two different options for pain control.  Last time she had a pain pump but this time he recommended an epidural, as it will involve less narcotics and risk of complication that could land her in the ICU.  The drawback to the epidural is that with the scarring in her back from the two previous surgeries (SDR and tethered spinal cord surgery before that) the medicine may not spread as well as needed.  If that happens they can change the pain delivery method.  As a lay person I always feel at a disadvantage in understanding these kinds of choices, but tend to go with the doctors' recommendations as long as they explain their rationale well enough, and the doctors here are really good at doing that.  It makes me think about what my clients must experience when I talk to them about their legal issues.

Suchitra didn't even want me to walk back with her when they wheeled her to the OR, and when the OR nurse called to give me an update, I asked whether she went off to sleep okay and the nurse said, "Yes, but she was so sassy we didn't want to put her to sleep."  She is definitely an expert at charming everyone she meets.  Next time I see her she will probably be more crabby than sassy, but I'm counting on Valium and the Disney channel to get us through the next few days.  We'll be here till August July 31 (earlier error - we're here just a week).  I'll write more about the recovery process in the next post.  Thank you for reading!