6 weeks post-surgery

I meant to update sooner than now, but we have been so busy!  The six weeks of recovery from orthopedic surgery went better than I had feared.  We head back to Gillette tomorrow to have Suchitra's casts removed.

The first couple weeks at home were really hard.  She weaned off pain medication pretty quickly, but the bar between her legs made the casts really heavy and she couldn't move  comfortably on her own at all.  So everything took a long time and was very physical for me.  I would not have gotten through it without the help of family, especially my mom.  As time went on, she became more mobile and able to move herself around.  She now gets herself around the house in the wheelchair very well.

While staying at home, mostly on the couch, was not the most fun August she has ever had, we did have a college student-nanny who kept things fun; I threw a huge birthday party for her about halfway through which gave her a big lift; and different friends and family made time to visit her so she had a lot of good quality time with a variety of people.

After she gets the casts off, she will be fitted with new AFOs.  I'm waiting for insurance approval on a walker that I believe she will need to use for several weeks before she is ready to get back to her crutches.  Her physical therapist is now coming to our house twice a week and their work together is excellent.

Homecoming and lots of new challenges

I have never been so worried about getting home from a trip, but things worked out okay and we made it just fine.  Gillette gave us enough pain medication to get through the next few days so I didn't have to go out to try to fill the prescriptions at Walgreens.  My cousin Erica drove us to the airport.  There were wheelchairs with attendants right inside the door, so I didn't have to search far, but I was so glad to have Erica there so I didn't have to leave Suchitra on the curb by herself while I found the wheelchair.  We discovered that by propping our suitcase on the footrests of the airport wheelchair, we could keep Suchitra's legs extended.

Getting through security was difficult because they didn't want to let her through with the suitcase propping up her feet, but somebody had the idea to put a plastic bin under her feet instead and that worked for TSA.  After I got through security myself, I looked over and there was a TSA officer signing Suchitra's cast!

Once we got to the gate, she was cranky and experiencing some pain, so I gave her more medicine.  That was a hard 45 minutes to get through.  And being moved in and out of her wheelchair was still very uncomfortable.  On the first flight from Minneapolis to Denver, they made us put the suitcase up in the overhead compartment for takeoff and landing, so I had to balance her very heavy legs on my knees and feet until they took it down again.  On our Denver to Portland flight, they let us keep the suitcase down the whole time and I was really grateful.

I tried taking her to the bathroom on the first flight and it did not work well at all - it was just too tight a space - very painful for her and difficult for me to hold her in position.  We tried again in the airport, but even the wheelchair-accessible stall was too small to fit her with her legs out straight plus me, the wheelchair and our luggage.  Thank goodness my parents were there to pick us up and we don't live far from the airport.

At home there were new problems to solve, like how to prop up her feet in our bathroom, how to fit her legs under the table to eat, and how to rearrange the furniture to make it all fit better.  Also, I had to take my car in to replace the seat belt that Tiller chewed through a few years ago, because she can't sit behind the driver's seat anymore, since the front seat has to be pushed all the way forward for her legs to fit behind it.  I had put off fixing it before because of the cost ($441! for a seat belt!) but this was a good reason to finally get it done.  My parents have been coming over to bring us groceries and other stuff we need and to make us dinner.  I appreciate them so much.  My dad got Suchitra a set of Carmen Miranda movies from Costco, which will be the perfect entertainment!

I had a rental wheelchair delivered here which has legrests for her feet and a reclining back.  It's more comfortable for her, but it's so heavy that I cannot lift it into the car by myself.  This is going to severely limit my ability to take her anywhere for the next few weeks, along with the problem of not fitting into public bathrooms.  Even though we'll be staying at home, we can put her into the wheelchair and take her on walks around the neighborhood.

Yesterday we went to our favorite hair salon, since we hadn't had time to get trims before leaving, and for Suchitra having shorter hair will be easier to take care of since she cannot take a bath or shower for the next six weeks (we'll be doing bed-baths).  She asked for an Audrey Hepburn cut and it looks really cute even with a little bed-head:

I guess Tiller must have been feeling left out of the whole medical experience because he came down with a nasty rash under three of his legs.  Jonathan, who takes care of him when we're gone, told me about it when he dropped him off, but I was so busy that I forgot to look at it until last night and it looked pretty bad.  I had some antimicrobial cleanser left over from the time he got a rash in his ear, so I washed him down and then put an old nightshirt on him so he can't scratch as easily.  Poor guy.  Good thing I'm getting to be such an expert nurse.

Suchitra hasn't needed any pain medication since yesterday morning, which is really great.  Her hip incisions look good.  My main concern at this point is getting her digestive system back in shape and keeping things moving along.  She also needs to be turned frequently to avoid pain and pressure buildup, as well as to keep her hip muscles flexible.  A Gillette nurse called to check up on us today and she said it sounds like Suchitra is doing great.  Emotionally she is in pretty good spirits although prone to fits of frustration at having to be literally stuck in this situation.  For such an active little kid, this will be a hard time to get through.  However, yesterday, Friday, marked one week already since the surgery.  So we only have two more weeks in which she has to have the bar between her feet and really can't move much at all.  After that, we will take the bar off and she can start walking a little bit and doing physical therapy even with the casts still on (Gillette gave us some flat shoes that strap onto the bottom of the casts).  On Monday I have to go back to work, so Suchitra will be at home with Rachel, her lovely nanny for the rest of the month.  Visitors will be more than welcome - just let me know if you want to come by!

I'll try to update periodically as her recovery moves along.  Thanks again everyone for reading.

Challenges

First of all, let me debut Suchitra's colorful casts.  Not the best picture, I'll try to get a better one later, but still, pretty awesome, huh?  As you can see, she has already collected quite a few signatures.

Today was a day of challenges.  It feels like our insurance company is trying to make this as difficult as possible.  I know, what else is new when it comes to health insurance?  The first challenge was that Providence will not approve us to get a reclining wheelchair with leg rests from Gillette, which we were going to bring back when we come back in six weeks to get her casts off.  We can get one at home, but this causes a big problem as far as getting to the airport.  I did not bring our wheelchair from home, since I was told that we would get one here.  We can't really use a regular cab since I can't leave Suchitra with the cab driver while I go in search of a wheelchair (MSP is not one of those airports where they just leave wheelchairs available near the front).  I called a medical transport company, but they wanted to charge $125, which I would rather spend on physical therapy (which Providence also won't cover enough of).  Thankfully, I decided to call my cousin Erica Timko who lives north of St. Paul and ask her for the huge favor, and she very kindly is going to rearrange her day to drive us to the airport tomorrow.  Thank goodness for the Timko connection!

And then to really add to my stress, the nurse just told me tonight that Providence won't cover Gillette's pharmacy to fill the prescriptions for Suchitra's pain medications to take home.  I will try to take the prescriptions to Walgreen's tomorrow morning and get them filled there.  She has transitioned from the epidural and IV and is now taking a major dose of oral pain medications - Oxycodone, Valium and Tylenol.  I don't think you can just quit taking those all of a sudden.  So we better figure out a way to get them somehow before we get on the airplane.

Before we came, I made a lot of phone calls to Gillette, Providence, and our primary care physician to make sure that the surgery itself would be covered; however, I didn't realize that we would have these specific issues with the wheelchair and medication.  I feel like Gillette could have helped to make sure these things would be covered ahead of time, since they know what has to be approved separately.  However, the only thing I can do at this point is just practice my patience and trust that things will work out OK somehow.

The other significant challenge of today was figuring out how to move Suchitra around with her new leg accessories.  She's a LOT heavier on the lower end now, and she was already on the edge of too heavy for me to lift before.  I really struggled today to move her around between the bed, wheelchair and toilet.  At first I was moving her with the knee immobilizers on, but that didn't work too well, and then the doctor came and said we didn't have to keep them on all the time.  And, poor thing, it is still painful for her to be moved, although each day gets a little better.  Of course, at home the setup will be different so we will have to develop new techniques.  With some practice, I think we will figure it out as best we can.

Casting day!

Things are moving right along here in the orthopedic unit.  Saturday and Sunday were uneventful - Suchitra spent most of each day sleeping, and when she was awake, she watched TV.  She is not as cranky as she was after the rhizotomy, but I am looking forward to her getting back to her non-medicated self.  Neither of us slept very well Saturday night, but they let us sleep in Sunday morning, which was nice.  They decided to turn up her epidural for Sunday night, and also give the Valium a little more frequently, in hopes that she would get more sleep.  This worked out well and we both slept pretty well Sunday night.  No sleeping in this morning though - an orthopedic resident woke us up at 6:15 am!

At about 9:15 the nurses came to take Suchitra to get her casts on.  She was taken into a separate room where we met a nice man named Laster.  He cut off her long bandages, which had a bunch of stuffing underneath them so when he cut them off, it looked like a stuffed animal's insides coming out.  Then he very carefully and expertly constructed her new casts.  They go up to just below her knees and all the way down to the bottom of her feet, though her toes are exposed.  I'll post pictures next time because right now she is prone and all covered up.  The casts are made of fiberglass and they have a bar in between to keep them positioned correctly.  It can be screwed on and off with a little key.  Then Laster signed her cast, "Laster the Caster."  Awesome!

Another guy came to fit her with new knee immobilizers, which she was a little disappointed about because we had thought that she might get a break from KIs while in her casts.  However, these are soft so she can wear them without pants underneath.  We don't know the wearing schedule yet.

After casting, she had X-rays taken to make sure the alignment is correct.  Then we came back here to her room where they turned off the epidural.  From now on she will have only oral pain medication.  Lots of questions yet to be answered, so I'm sticking close to the room to be here when people come by to tell us stuff.

Another successful surgery

Surgery went great.  Dr. Novacheck sounded very pleased.  He said that all three procedures went well, and that she has really healthy bones and tissue so they were good to work with.  There was another orthopedic surgeon named Dr. Healy who worked with Dr. Novacheck.  Each of them did one side of her leg, so it went pretty quickly.  She was done with surgery around 10:45, I think.  Then while she was still under anesthesia, they molded new AFOs, so she will get those after the casts come off.

I was able to go back to the PACU and see her around 12:15.  She came out of the anesthesia much, much more calmly than she has in the past, so that was a relief.  She also didn't seem as groggy and loopy, which I think was a result of using the epidural for pain control rather than the pump that she had with SDR.  It sounded like the medication spread out well from the epidural site in her back despite scar tissue from the SDR and tethered spinal cord surgery, so the anesthesiologist's choice was good.

After SDR, she recovered in the Rehab Unit, but this time she was taken to the Orthopedic Unit.  Apparently this unit was renovated just this past June, and I was super happy to see that we had a single room - no chance of a roommate - and it's very nice.  It has a shower in the bathroom and a fridge!  No more showering across the hall.  It's also quieter and just more pleasant.  There is a nice glider right next to the bed.

She recovered so well yesterday compared to what I remember about the first day of SDR recovery.  Some sleeping, but she also watched TV and talked on the phone.  She didn't fuss or cry that much at all.  The nurses came in periodically to administer pain medication and shift her position in the bed.  She has big puffy bandages all the way from her toes to her hips that look like this:

And now check out this big smile:

Last night, however, was a different story.  She slept pretty well from about 9 to 10:30 pm, but then not well again until 6:30 am.  Off and on dozing and lots of crying and fussing.... I think she was in pain from muscle spasms, and as the night wore on, she started to get anxious about not sleeping and that added to her upset.  She would wake up, start crying, we would press the nurse button, but then when the nurses would come in, she would quiet down, maybe because she didn't want to seem so upset in front of them.  This was pretty similar to the first night after SDR but I had forgotten.

She slept well from 6:30 am to maybe 9:45 am or so.  Then she had breakfast, got washed and her gown changed, and they just turned her onto her stomach to help stretch out her hip muscles.  She is watching the Disney channel right now.  I'm soooo tired.... maybe I can get a nap in this afternoon.

It sounds like today and tomorrow may be kind of the same.  Monday will be a big day though.  The epidural will come out.  Her long puffy bandages will be replaced by casts from the feet to below the knees.  These casts will stay on for the next six weeks; we'll come back here for a couple days in early September to get the casts off and get her new AFOs.

Thank you everyone for the messages.  I read them all to her and they make her so happy!

Back to Gillette

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!

Goodbye to Minnesota

I can't believe this is the last post I will write from Gillette - we leave tomorrow about 4:30 pm and arrive in Portland at 7:49 pm.  I can't really say that the time has gone by quickly, but I can say that I am so glad we came.  I feel very optimistic that this surgery will make an enormous difference in Suchitra's (and my) life and we are beyond lucky to have had the opportunity to do it.

This past Wednesday we had a conference to plan for her discharge and returning home.  Staff from all of the departments who participated in Suchitra's care were there, and on the phone we had all of the key people from Peninsula Elementary in Portland, which was awesome.  Having them up-to-date on her condition will make the transition so much smoother.  Her physical therapist here and the physical therapist who will be working with her at home have corresponded separately.

We do have a lot of work ahead of us to realize all the benefits of this surgery.  On Monday she will start physical therapy at an outpatient clinic 4 times a week, after school, for at least the next month, then tapering down to 1-2 days a week.  On the days we don't go to therapy, we have a home strengthening program with many exercises to do.  We have a shorter home stretching program to do 7 days a week twice a day.  She needs to spend 30 minutes prone every day 3 times a day.  They are going to provide her with a stander at school so she can do one of the 3 prones in that.

We also need to build in activities throughout her day to reinforce all this, such as walking on her knees, crawling, and sitting cross-legged.  She is still too weak to walk more than a step or two without help.  However, she can walk upstairs quite well with help, so getting into our house will be OK.  Then once in the house she is supposed to either crawl or walk on her knees.  She should be walking more independently (with a walker) in a couple weeks or so.  She will have to use a walker at first, then back to crutches, just like she did before surgery.  Whether she gets to the point of not needing any assistive device is yet to be seen, but I have a feeling that her own determination will get her there.

This weekend my dad and I watched Suchitra's video from when we came here in June for the evaluation, and then I showed it to Suchitra.  The difference in her gait from then to now is so striking that it gives all of us great motivation to keep going.  When I get home I will figure out a way to post those videos on here because they are just so cool.  I will also try to keep posting periodically to let you all know about her progress.  Thanks so much for following us - it's so cool to have so much support!

At this point we plan to return in six months (at the end of February, brrr!) for another evaluation, at which time we will plan for the next and hopefully final surgery next summer.  That operation is called SEMLS (single-event multi-level surgery) and based on what the surgeon mentioned in June, she will probably need to have her femurs (thigh bones) and tibias (shin bones) on both sides de-rotated, as well as possibly something done with her feet.  The cool thing is that they can do all of those procedures at one time.  I believe that is a fairly unique way to do it, though I do not know yet whether it can also be done in Portland or not.  That's something I still have to research.  And of course it will all depend on her progress so I'm not positive that's what will happen, we'll just have to see.  I did understand that while the rhizotomy will have decreased her oxygen use by 30%, the additional orthopedic surgery will reduce it to 50% of her pre-surgery level.  That would give her a LOT more endurance for walking and other movement.

On Friday I scheduled her for swimming lessons starting next Sunday afternoon through early December.  She has done so well in the pool, and this will give her a fun way to build strength and endurance, since we can't go back to horseback riding until early January.

My dad is here to help us get back to Portland.  This afternoon we had an insanely good time at the Minnesota Twins v. Detroit Tigers baseball game at Target Field.  Beautiful day, really nice ball park.

The Twins didn't win but two pretty exciting things happened.  Miguel Cabrera of the Tigers hit a home run and batted two other runners in as well, which means that as of right now he has theTriple Crown - the most home runs, most runs batted in, and highest batting average in the league - which nobody has won since Carl Yastrzemski in 1967.  It all depends on what happens tomorrow with the rest of the games that end the regular season, but it would be pretty exciting if he were the first to win it in 45 years.  Plus he is a super humble and community-oriented guy so he deserves it.  We were sitting above left field and Cabrera's home run bounced right off the rail below us and was caught by a guy not ten feet away from us.  I ran down and took a picture of him with the potentially-history-making ball.  Then I told him why I was excited about it and he had never heard of the Triple Crown.

 
The other exciting thing was that one of the Twins players hit a Grand Slam home run - i.e. a home run with all the bases loaded so four runs batted in.  Unfortunately this was not enough since Detroit beat them with six runs.  Not to be disloyal to the Twins, but it was pretty cool that Detroit won since this gives them a shot at getting into the playoffs.  The Twins are now last in the league so they don't have any chance.

Here are the baseball aficionados enjoying their perch. Of course we could not properly enjoy the game without some Twins headgear:

Lots of news

Sorry for the lack of updates.  We have a lot to report!  The reason I haven't posted lately is that for several days I have been fighting with my computer and phone to get more videos uploaded to the blog.  I'm finally giving up - I don't know whether the problem is the phone, this computer, or the blog, but for whatever reason, I haven't been able to upload any more videos of Suchitra's walking.  I'm really bummed about this as it would have been so fun to show you how well she is doing.  I'll just have to describe it the best I can.

They have had her doing Lokomat sessions every day since she first started them the week before last.  Last Tuesday, after her session, the therapist had her walk on the treadmill while she was still suspended from the harness, but without the robot guiding her legs.  So the treadmill was moving but she had to walk manually.  She looked good - definitely hesitant and dragging her feet a little bit, but bending her knees much more and using a heel-toe pattern that she never had before.

This past Friday I took another video in which she was walking along the ground with two long parallel bars for support on either side.  The therapist was moving with her, closely supporting her and making sure her gait was as steady as possible.  Just the difference from Tuesday to Friday was amazing.  Even though her knees periodically buckle because she is still weak, her gait is so much more normalized.  I just couldn't believe it, watching her.  The other cool thing about the Lokomat is that each day she carries a little more of her own weight and does a little more of the work herself.  So it's a good way to transition back to independent walking.

It's pretty cool to watch her get used to her new body.  I have not heard her say one word of complaint about not being able to move as quickly as she used to, or not being as strong as she used to be.  It's hard to get much description or self-reflection out of her, but as best I can tell, she definitely notices how much more comfortable and loose her body is, and she seems to accept that the hard work now is going to pay off for her in the long run.

She started pool sessions last week and did great there too.  Here are a couple pictures:

In the pool they have her stretching, kicking and walking.  The addition of the pool made her have a really full schedule.  All of last week and continuing into this week, in addition to her daily Lokomat sessions, she does two other physical therapy appointments and two occupational therapy appointments each day.  Then there are occasional sessions of music therapy, therapeutic recreation, and psychology.  Plus, she has to get in three 60-minute sessions of the stander and prone cart every day.  And don't forget school, although it is only for 30 minutes each day.  With such busy days she is very tired by the end of them.

All of last week an occupational therapist came in our room each morning and helped her get dressed.  She still has some tight muscles and is a bit stiff from the surgery, but she is able to move in different ways than she ever could before.  I can tell that with practice, she is going to become an independent dresser sooner rather than later.

It was so nice to have my mom visit.  It made last week go a lot quicker for me than the previous weeks.  With her rental car we were able to get out of the hospital and explore St. Paul while Suchitra was busy.  I took her to the Minnesota History Center which I had toured by myself the previous week and loved.  My favorite parts were the exhibit on the World War II generation, the tour through Minnesota weather (blizzards!  tornadoes!  mosquitoes!), and another section where they recreated an actual house from a St. Paul neighborhood and told the stories of who has lived there through the years, from the German immigrants who built it, to the Italians who worked on the railroads in the 20s and 30s, to the white working-class families of the 60s and 70s, and finally the Hmong families in the 80s to 2000s.  Apparently this area has the highest Hmong population of any metro area in the U.S.  The museum really impressed me with its creative and dynamic way of communicating what could be dry history through hands-on activities and great use of technology.  For example, you could sit in a recreated basement and hear, see and feel what it might be like to live through a tornado.  I wish Oregon had as cool an institution.  We have some great stories to tell too!

My mom and I also strolled a neighborhood and had a delicious dinner out with Suchitra at a nice restaurant downtown (thank you Claire and Julia!).  And we attended the broadcast of Prairie Home Companion at the Fitzgerald Theater on Saturday afternoon!  I have been a PHC fan since college.  My grandma, who grew up in Minnesota, liked the show too, although I remember she was a little annoyed that he focused so much on Lutherans and not enough on her people, the Catholics.  She would have appreciated this marquee at a nearby theater:

As further proof that Minnesota is not just for Lutherans, I noticed a giant Scientology church across the street from the Fitzgerald Theater.  I'm not sure the picture does justice to what an imposing fortress this place was:

Did you know that Garrison Keillor never uses notes when he does the "News from Lake Wobegon"?  He just wanders around the stage extemporizing.  What a memory.  If you saw the movie, the stage looks the same:

The reason I didn't feel badly about leaving Suchitra at the hospital while we were enjoying the radio show was that my cousin Greg, who lives in Nederland, Colorado, came to visit for the weekend.  It was so awesome to see him and we had such a great time together.  I think he played about 50 rounds of Uno and over two hours of catch with her baseball and mitt.  I am so lucky to have such wonderful relatives and friends.  We are totally enjoying the cards, gifts, and support from all of you!  Thank you so much!

Now that we are in the home stretch, I am thinking ahead to what it will be like when we come home.  We have a "family conference" scheduled for Wednesday that will include her care team here and several people from her school at home.  I am hoping to get a lot of questions answered there. 

We leave this Sunday and next week Suchitra will start outpatient physical therapy four days a week at a clinic in Vancouver.  She won't be able to walk outside of therapy for some period of time I'm not sure about.  I can't remember if I already mentioned this, but I was told not to expect her to return to her pre-surgery level of functioning until maybe 12 weeks after the surgery.  Despite this, I feel so encouraged thus far about the progress she has already made that it seems reasonable to think she is going to improve a lot further.

Here is a cute picture that I took after my Aunt Anne sent her a pillowcase to brighten the room:

Remembering Aunt Pam

Tonight we are grieving the loss of my dear aunt-by-marriage, Pam Guevara.  She was diagnosed with brain cancer almost exactly four months ago and passed away at home early this morning, surrounded by family, friends and enormous love.  Pam and my mom were pregnant with their first children, my cousin Kimberly and me, at the same time.  Pam and her husband Dan (my uncle Rey's brother) moved to southern Oregon around the same time that my parents, grandparents, aunt and uncle, and several other family friends did, around 1978-80.  Basically we all just brought the party up from southern California to southern Oregon!  We cousins were so lucky to grow up surrounded by close family and friends - we celebrated holidays together, picnicked and fished together, and cut down our Christmas trees in the woods together.  Pam was an elementary school teacher in Grants Pass for many years and loved helping children.  In the past few years she and Suchitra developed a special relationship.  Along with many, many other people, we will both miss her kind, warm presence in our lives more than I can express.

Kimberly wrote a really beautiful tribute to her mom that I would like to share here:  "She is the most amazing woman and role model as a wife, mother, sister, daughter, friend and teacher and we are blessed to have had her here with us for as long as we had her.  There is a huge void in all our lives, and while we struggle to cope, we know too that her legacy of love, joy in living, compassion, servant's heart and spirit of forgiveness will live on forever in all of us."  I can't think of a better way to remember Pam, and even though it's so hard not be with our family at this sad time, these words are very comforting to me.

This weekend we were super lucky to get a visit from my longtime friend and bar exam study partner, Heba Nimr.  I would not have gotten through law school without Heba.  Literally, would have bombed out.  Then she got me through the California bar exam.  Her friend from high school, Trisha, lives here and was the one who saved me from hospital cafeteria food (i.e. imminent starvation) by taking me to the grocery store a few days after we got here.  Yesterday we sprung Suchitra from the hospital and drove her to Trisha's house, where we feasted on ice cream and Suchitra's favorite south Indian cuisine from a local restaurant.  What fun to get out of the hospital and into "real" life for a while.  Here we are with Heba.  It just occurred to me that now she's pretty much an expert in Helping Monica Survive Difficult Experiences.

Heba also took some pictures of us that will give you a sense of what we're up to.  Here we are in front of our wall of love (your cards and letters):

This is what we do for fun a lot of the time:  Uno!

Suchitra has a busy week of therapy ahead.  She will have three Lokomat sessions, Monday, Wednesday and Friday, I think.  Possibly some pool therapy as well now that her incision has healed enough so that she can be immersed in water.  I am so excited that my mom will be flying in tomorrow and staying for a whole week.

Biking and walking with a robot

Suchitra is doing great.  She is actually ahead of schedule in her rehabilitation.  This week she has been getting to move in several new ways.  You already saw the stander, which she is able to use 3 times a day for 30 minutes each time.  She still has to use the wheelchair and the prone cart as well.  The stander and prone cart are most important because they are stretching out her hip flexor muscles.  Even though her muscles are no longer spastic, they are still tight as a result of all that time they spent being spastic.

In physical therapy she has been able to ride a bike!  It's foot-powered, and the therapist can walk behind and push as well.  She is working up to doing more of the work herself.  On Tuesday I walked along with them as they went outside and around the whole hospital complex.  Here she is on the bike with her physical therapist Amy:

On Wednesday she started walking on an absolutely incredible machine called the Lokomat.  It is a combination treadmill, pulley system and robot that helps retrain her brain to walk with an appropriate gait.  First she has to get hooked into a harness that is sort of like a rock-climbing harness, with straps and pads, and then she is suspended from more straps over the treadmill:

Then she gets hooked into the robot, which hugs onto her legs and actually moves her legs for her.  The robot can do more or less of the work depending on how the therapist sets it up:

Now she is connected into the robot:

Here is a video of her walking in the robot.  I am so sorry that it's sideways - there must be a way but I cannot figure out  for the life of me how to rotate it so that you can see it vertically. Anyone with more tech skills than me know how to do it? On the video, the therapist is explaining the safety features to me while at the same time playing catch with a beach ball with Suchitra.  The blue screens up in the right corner are showing how much work she is doing relative to how much the robot is doing.  The pulley is on the left and goes up and down to mimic a normal gait.  Isn't this amazing?  This machine is made in Switzerland.

She's definitely not ready to walk without the Lokomat yet.  Today Amy was having her practice using a transfer board to get from her wheelchair in and out of bed and on and off the toilet.  By the time we get home, she probably won't need the transfer board, but it will help her get a little more independent while in the hospital.  Amy had her try a stand-pivot onto the wheelchair, but her legs are still pretty weak to accomplish that on her own yet.

We're looking forward to the weekend because my good friend from law school, Heba, is coming to visit!  We plan to escape the hospital for a little while and have some fun!

Thank you all so much for reading, sending cards and treats, and continuing to support us through our hospital stay.  Only a little over two weeks to go.

Exciting news!

Yesterday the Gillette patients were surprised by a visit from Joe Mauer, catcher for the Minnesota Twins baseball team!  This was a very big deal around here because he's a big star of that team.  According to our friend Greg Fishwick, who is a major-league baseball expert and a Twins fan, Joe Mauer is an all-star catcher, won the American League batting championship three times, and yesterday he got three hits in the 8 to 7 Twins victory against the Cleveland Indians.  Mauer got a single, a double, and a triple.  (He must have been inspired by his visit to Gillette.)  Greg says that Joe is the best player on the Twins, and he also does a Head and Shoulders TV commercial.  I can report that Mr. Mauer was in fact sporting a very nice head of hair.  He's a pretty handsome guy.  Unfortunately for the ladies around here, he is already engaged to a nurse who works in the operating room at Gillette!   

What luck for Suchitra that her grandparents had just sent her a baseball and mitt.  He signed both the ball and mitt, and posed for pictures with all the kids.  I was able to get a couple quick shots, but I didn't get a great picture of the two of them.  I've been promised that someone will email me one and I'll post it here when I get it.  For now, here are pictures of the two of them chatting and him signing Suchitra's ball:

Suchitra also had fun with the Twins' mascot, T.C. the Bear, who was part of the entourage.  He even tried to push her prone cart:

Another exciting thing that happened yesterday was that Suchitra got to start spending some time in the stander.  She will now be spending time in the wheelchair, prone cart, and stander every day for the rest of our stay here.  At this point she is supposed to do 30 minutes in the wheelchair 3 times a day, 30 minutes in the stander 3 times a day, and 60 minutes in the prone cart 3 times a day.  I'm glad that the nurses are helping monitor this because her schedule is getting kind of complicated.

Here are a couple pictures of her in the stander.  These were taken in the skyway that connects the wing of the hospital where our room is to the therapy clinics and the Healing Garden.  It's a nice space, with chairs and tables along the sides.  I'm not sure if you can tell from the pictures but she is strapped into the stander both around her back and at her legs.  She says it's pretty comfortable.  Definitely easier to maneuver than the prone cart which is very heavy.

In my walks outside the hospital I have noticed skyways all over the downtown area.  I imagine those are pretty nice to have during the winters.

Making steady progress

Sorry I haven't updated in a few days; Suchitra is doing great, and I guess we've settled into more of a routine so each day has seemed a little more ordinary than when things were changing so quickly.

During the week she continued her schedule of twice-daily physical and occupational therapy mixed in with school and other fun activities like music therapy and therapeutic recreation.  Saturday she had one session each of PT and OT, and today, Sunday, is a free day.  As I'm typing this, she is in the playroom playing a game with one of the other patients here.  I was happy that she showed interest in doing that - she has interacted a little bit with some of the other kids, but mostly she prefers to get the nurses' attention.  And they have jobs to do so that isn't always the best thing.

Most of the other kids here are pretty severely impacted by whatever other disabilities they have, and are much less verbal than Suchitra.  Sadly, there is a child in the room next to us who screams constantly.  I don't know what his situation is but I feel so sorry for his parents.  There are a couple other kids who also had rhizotomy surgeries, but one just left and the other is on her way out soon.  Maybe more will come at some point.

I watched her PT and OT sessions on Friday and was proud of her effort and progress.  They are working on increasing the time she is sitting up, and trying to strengthen her core muscles.  She is required to be in her prone cart most of the time, and as of Friday, she is supposed to be in the wheelchair for 3 times a day, 15 minutes each time.  It always ends up being a little longer than 15 minutes though but that hasn't seemed to be a problem.  I think the reason they limit it is to prevent her from having hip flexor spasms.  Next week she will spend longer periods in her wheelchair.  She tried out a handcycle yesterday but she said it was hard.  The kid who just went home was getting outfitted with a regular bike with large-size training wheels on his last day, and I am very, very hopeful she might also be able to use a bike like that at some point.

Here is a picture of her enjoying the baseball, mitt, and jersey sent to her by her mega-baseball-fan grandparents.  This was taken out in the Healing Garden.  We've been going out there in the evenings to play catch.  This will be easier when she can sit up in the wheelchair for longer periods, but even so she is perfecting a pretty solid pitch.

One thing that concerns me a little is how stiff her back seems to be when she does sit up.  I assume it's a normal part of the healing process, but will ask the doctors about it when they check on her tomorrow.  She is able to be lifted onto the toilet now instead of the reclining bumblebee commode, but it's very hard for her to lean forward even without the knee immobilizers on.

Sleeping has been slow to improve.  We had several difficult nights this week which made both of us a bit cranky and tired during the day.  We keep working on fine-tuning the routine with the nurses, and the last couple nights went better so I hope this positive trend continues.

She does enjoy her Montana pajamas (thanks, Aunt Kathleen!)

Another concern is that she is still not eating very much.  The last couple times they weighed her, she's been losing weight.  To give her a break from hospital food and try to tempt her tummy a little more, last night I walked out to a Thai restaurant several blocks away and brought dinner back for both of us.  It was really good!  Here is a picture of her eating dinner in her wheelchair from a couple days ago. 

While Suchitra plugs away at therapy and other activities, I have been working a little each day and reading a lot.  I finished What is the What by Dave Eggers, as well as Whatever It Takes by Paul Tough (about strategies to fight poverty in America suggested by the work of Geoffrey Canada's Harlem Children's Zone) and Will in the World, a biography of Shakespeare by Stephen Greenblatt.  I also have been spending too much time reading the New York Times and following all the political coverage.  Each day I've been able to take long walks outside, thanks to the great weather.  I found out that the downtown YMCA lets out-of-towners use their facilities for $10 a visit, so I took a yoga class yesterday which was very nice.  So even though living in a hospital is not particularly fun, I'm lucky to have some good options to keep myself busy.

Suchitra has been pretty homesick, but your comments and emails, cards and gifts have helped her a lot.  Plus, by the middle of this week we will be halfway through our stay.

I will leave you with some pictures of the fun our dog Tiller is apparently having without us.  He got to go on a hike to a meadow overlooking Mt. Hood with his dog friend Bogart and human friends Carolyn and Brian.  I hope he isn't too cool for us by the time we get home.

Happier days!

It's funny to say this, but I am so thankful that the weekend is over!  Sunday night was really rough.  Suchitra started off to sleep wonderfully because of her bath, but then woke up and couldn't seem to get comfortable or calm for the rest of the night.  She kept fussing, crying, and calling the nurses in.  By the morning we were both exhausted and cranky.  Then she had to do occupational therapy at 8:30 am and physical therapy at 11, and keeping her awake and on the prone cart all morning was NOT fun.  Finally after lunch she took a long nap.  She was very pleasant the rest of the day, and we enjoyed going out to the Healing Garden for some late-summer evening air.

I consulted with the nurses and doctors and we made a plan to be more proactive about giving her medication at night.  We also put her on melatonin, which should help normalize her sleeping schedule.  As a result, Monday night was much better.  She did wake up a couple times, but not for long.  I am hoping we can continue this positive trend.

Today, Tuesday, was a great day for both of us.  After the good night's sleep, she had a full day of therapies and school from 10 am to 4 pm.  I only saw her for lunch.  This was her schedule:

Physical therapy 45 minutes
Occupational therapy 30 minutes
School 30 minutes
Therapeutic recreation 30 minutes
School 30 minutes
Physical therapy 45 minutes
Occupational therapy 30 minutes

As I mentioned, we had lunch together, and a nurse brought in a whole stack of wonderful cards and packages for us!  THANK YOU ALL for thinking of us!  We have the best family and friends ever.  Suchitra was thrilled.  I hope to write more individual thank-yous soon so I'm sorry if I haven't thanked you personally yet... it will come!
At this point in her recovery, physical and occupational therapy are pretty much working on the same goals - strengthening and regaining those gross motor skills.  The kinds of exercises she is doing are reaching, rolling, bridges, and working toward side-sitting.  I didn't attend her therapies today but she said that she had fun.  However, her favorite part of the day (other than getting cards and presents) was school!  She gets to work with the teacher one-on-one.  Today they got acquainted and did some math and reading.

Not only was it a great day for Suchitra but it was also my best day yet.  I was able to catch up on work emails for a while, and this afternoon, my friend Heba's friend Trisha picked me up and took me to a grocery store!  It was a natural foods co-op and they had all the kinds of food I like.  I did not realize that I have become such a picky eater, or so obsessive about healthy food, but apparently I have.  Finally tonight my stomach is full and happy with a defrosted Amy's vegetable lasagna.  Trisha was a lifesaver and I look forward to hanging out more with her and her cute red-haired baby, Mary Catherine.  I know that we will be kindred spirits because we both like Laura Ingalls Wilder and John Denver.

Suchitra is fast asleep and a nurse just brought in her schedule for tomorrow.  It looks like school starts first at 8:30 am.  This means I need to go to bed now because it's going to take a lot of energy to get her ready so early in the morning.  Mainly I have to really work hard to get her to eat breakfast.  She's never been much for breakfast anyway, and eating while reclining at a 20-degree angle doesn't look fun.  Then I have to get her dressed; the doctors come in and check her over; she has to be lifted on and off the commode (nurses do that as she's too heavy for me to lift), and I can roll her onto the prone cart.  It's quite a routine.  But fun at the same time... we're doing exactly what we set out to do, and it's all going well.

Working on getting better

I believe these really are the most difficult days in this process, and despite the difficulty there are a lot of positive signs too.  She slept quite a bit yesterday (Saturday) as well, and the first time she tried the prone cart, she did not like it AT ALL.  She was able to tolerate about 1/2 hour in it, then wanted to go back to bed and fell fast asleep.  I had thought she would enjoy getting out of the room, but I think the position was uncomfortable after being on her side or back for so long.  She also didn't like being strapped into it.  She was pretty cranky in the evening, and had a very restless night last night.

Then this morning we tried the prone cart again.  We went outside to the Healing Garden, a lovely accessible garden/playground just for the kids in this hospital, right off the skyway that links the main hospital to the therapy clinics.

The weather was perfectly sunny with a little breeze and it was so nice.  This is the only smile I could get out of her.  Mostly she just fussed about not wanting to be in the prone cart.

Back to the room for more sleeping.  She perked up for lunch, fed to her by one of her nurse friends named Rachel.  After lunch, Rachel took her to do an art activity in the prone cart.  I don't think she complained as much the second round.  During this time I was able to get outside for a lovely hour-long walk.

We got her back in the prone cart for another hour this evening, and by that time she was saying, "Actually, just to tell you, I like the prone cart now."  I took her to the skyway and we read Ramona the Brave. That made three hours today which I think will make the physical therapists happy.

Now that she is disconnected from all of the hookups, and weaning off some of the meds, they are trying to increase her independence little by little.  When she needs to go to the bathroom, she has to sit on a reclining chair that has a hole in the appropriate spot (it's called the bumblebee commode because it is yellow and black).  They also asked her to help roll on and off the prone cart from her hospital bed.  While at first she needed assistance even to turn over a little bit, now I think she is almost back to normal with her upper body strength.  The idea is to keep her straight and aligned so that her back can heal properly.

Her nurse Lisa discussed with me what the rehab goals for this week will be (I think the occupational and physical therapy goals are separate).  They want her to start eating independently, dressing at least her top part independently, and using the commode at least half the time.  These seem well within her grasp to me at least physically, although I know she enjoys having other people do the work for her.  Lisa also said that she will be using the prone cart to get around all this week.  Next week she will use her wheelchair.  The week after that, she will use a stander, which is like an upright wheelchair.

I had a chance to talk with a couple of the nurses who have watched rhizotomy surgeries performed.  It was so fascinating.  I had read the technical description, but their description helped me understand it a lot better.  They said that the surgeon cuts through the skin, and then slices with a saw into the top part of the backbone (called the lamina), basically bisecting it horizontally.  The top part of the bone is peeled up and taped down to the upper back.  Would you have thought the backbone was so flexible as to be able to do that?  Underneath that is the dura, which is like a coating, which is also cut away.  Underneath the dura is the actual spinal cord which looks like a bundle of white threads, just the same thickness as embroidery threads.  They lift each one with a tool like a little crochet hook, and stimulate it to see where it is connected to.  They can tell where the nerve is connected to because there are electrodes placed all over the body that somehow light up when a nerve is stimulated.  When they find nerves that are connected to the spastic muscles, they snip those nerves with a little pair of scissors.  Then after they are all done, they just put the backbone right back over the top of the dura and - get this - the bone simply grows back together.  They don't stitch or glue it down or anything.  So part of the point of lying flat for three days is to start to give the lamina time to grow back and to make sure the cerebral spinal fluid doesn't leak out.  And also, we have to be careful not to twist her torso in certain directions for three months, because that could mess it up.  She can twist a little herself, because her body will tell her when to stop, but another person cannot twist her.

Tonight she had a bath on a giant blue contraption suspended over a giant bathtub.  She cannot take a shower for two weeks because of the incision.  The nurse who gave it to her said that in three years of working here, Suchitra is the only child she has had who actually fell asleep while she was being bathed.  When she was wheeled back in here she looked exactly like someone who had just gotten a spa treatment.  I'm crossing my fingers that she sleeps well tonight - we both need a better night's sleep.

Tomorrow she has occupational therapy at 8:30 am, and then physical therapy at 11:30 am.  This is a short day because of the Labor Day holiday.  On Tuesday she starts school and a full day of therapy.  I don't really have a clear sense of what that schedule will be like but I am hoping that at some point, I will have enough time to get to a grocery store.

Thanks for your comments, I have been reading them to her and she loves knowing that her family and friends are thinking of her!

Rough Friday, but looking forward to Saturday

She slept the entire morning yesterday, which was Friday.  She woke up long enough to eat breakfast around 8, but then fell back to sleep until 12:15, when it was time for lunch.  She couldn't figure out how it went from breakfast to lunch so quickly!  Then she was awake most of the afternoon and evening, and was not a very happy camper.  For such an active girl to be stuck in bed for three days, unable to even roll over without help, it was no surprise that she was getting less and less tolerant of the situation.  Thank goodness for drugs and the Disney Channel, but even those weren't enough to make it all better. 

We watched most of Hairspray last night.  I think under other circumstances she would have liked it, but it was hard for her to focus - there were a lot of complaints about back pain and general discomfort.  I was relieved when she finally got to sleep.  Then it was a pretty restless night.

In the taking-care-of-myself department, I was able to go for a 45-minute walk outside the hospital while she was sleeping yesterday morning!  This was the first time I'd been outside since Wednesday so it felt great.  I haven't been able to do much exercising since spraining my ankle.

I think today is going to get a lot better.  We have been promised that she will get a bed-bath later this morning.  They will draw some blood to check her nutrition (which is probably decreasing after three days of hospital food).  She has physical therapy at 11:30 am, and will get to be transferred to the prone cart which means she can leave the room!

She is working on a new hairstyle:  the hospital Mohawk...

Good thing she's getting a bed-bath today!  They can't get her fully wet yet because of the incision (which is healing up amazingly well - you would never think she had major back surgery three days ago.  A nurse told me that they are always coming out with new and improved wound-healing stuff).

Back to the Disney Channel...her favorite shows are Good Luck Charlie, A.N.T. Farm, Jessie, Shake It Up, and Phineas & Ferb (which is my favorite - hilarious).  More soon.  Love to everyone and thanks again for the support.

A quiet day of healing

The second day of recovery went pretty well overall.  She was quite restless last night, complaining of pain and seeming more distressed than she had yesterday, so I was happy that she slept intermittently for a lot of today, including as I'm writing this.

Other than sleeping, it was pretty much the Disney Channel all day today.  She hasn't shown any interest in being read to yet.  I brought our I-pod and speakers from home, and she listened to an Indian music playlist which helped her get to sleep for one of the naps.  A Child Life specialist came by and brought an easel that fits over her stomach so she could paint, but she hasn't been comfortable lying flat on her back enough to do that yet.  Mostly she is lying on one side or the other.  The nurses have to turn her two at a time in a multi-step operation.  She was able to talk a little bit on the phone with Grandma and Grandpa, and later Aunt Sarah, and then she was teasing and laughing with some of the nurses, but mostly she's still pretty sluggish. 

As far as medicine, earlier today they took out her PCA (a continuous drip of pain medication) and it's a good sign that she was ready so early to do that.  Now they are giving her Tylenol, Oxycodone, and Valium orally.  When she complains of pain, she says it is in her back, which makes sense given the size of that incision.  Otherwise I know she doesn't like lying still, but she doesn't seem to be in much visible distress.

She wanted to show you guys all the apparatus she's hooked up to, so here's a picture:

The little blue things are all part of one cord that is connected to the IV.  Here's a picture of her watching the cool TV that is attached to a movable arm so you can position it wherever you want:

Not much else to report.  I'm doing a lot of reading.  I still don't like to leave her for very long, although she has no trouble summoning the nurses when I am out.  I'm feeling positive about her progress so far.  I can tell that she is going to enjoy being here once she feels better.  There are other kids here using similar equipment to what she will be using, and they look like they're having fun.  Oh, and we got a visit from a therapy Golden Retriever named Trooper.  This was much more therapeutic for me than Suchitra.  When people ask her who else she lives with, she'll mention Tiller if they ask about pets, but she never fails to add that he is "annoying."  Clearly I'm the only one who is missing him!

Out of surgery

She did great!  Dr. Dunn came out to update me after it was over, while she was in the recovery room, and said that everything went great, and that she cut 33% of the nerves, which she said was an ideal amount.  After that I was able to go back and be with Suchitra.  Here's a post-surgery picture:

Super zonked.  She hasn't seemed very distressed or in much pain, and the nurses have been doing a great job all day of staying ahead of the pain.  She has a continuous IV drip of pain meds.  We came up to our room in the Rehab Unit around maybe 2 pm and met a lot more nurses.  She has to lie flat, switching between her back and her side, until Saturday, I think.  After that she will lie on her stomach on the prone cart, which can be wheeled outside of the room.

She has the IV and a Foley catheter in, plus some other monitors, of which she is tolerating quite well.  She wants to sit up and she has talked all day about being hungry, but she was only allowed to eat ice chips a little earlier this evening and she just had one saltine cracker.  She can also drink some water.  They plan to dole out the liquids and foods a very little at a time, so that she doesn't throw up.  Earlier we watched Guys and Dolls and she was singing along as best she could.  The Disney Channel has kept her occupied the rest of the time.  I am worried that tomorrow or the next day she's going to get pretty antsy and fussy.  I'm really proud of how well she has done so far, but I know the Valium is helping!

She has to wear these styrofoam tube sort of things that go from her thighs down to her ankles, called knee immobilizers:

Apparently these will stay on for a long time, the point being to keep her aligned, help her back heal, and stretch out her muscles.  I saw the incision in her back when the nurses were checking it and it's pretty big.

I stayed with her the whole time until about 6:15 pm when I went to get dinner at the cafeteria.  I really did not want to leave her, but I missed lunch so I was getting super hungry.  The food options are very limited, especially non-meat, and I'm hoping that after a few more days when she starts to get busy with therapies, I will have enough time to take a cab to a grocery store and get some stuff I can actually eat.  However, there is only minimal room for refrigerated or dry storage.  I just got a tour of the Ronald McDonald Family Room, which is a large, homey kitchen/dining/living room that patients' families can use.  It looks like a great space.

I don't anticipate getting a lot of sleep tonight, as the nurses keep coming in and out every half hour or so to check her vitals and monitor medication.  The anesthesiologist stopped by and said she is doing great.  She's only dozed off a little bit, mostly watching TV.  Keep your fingers crossed that in the next couple days she stays calm and keeps healing as well as she has done today!

Oh, I also figured out how to ratchet down the comments setting so you no longer have to register or have a profile.  That should make it easier.  Thanks so much for all the messages and positive energy, it is making a big difference and helping a whole lot.