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.

In surgery

We made it to the hospital on time this morning, but got very lost while trying to find the surgery unit again.  This hospital is super confusing to navigate, with several sets of elevators that each take you to different levels.  Especially difficult for someone as directionally challenged as me.  So I got as far along as I could while carrying all the luggage, but finally gave up and called the surgery unit to ask for someone to come help us.  They brought a red Radio Flyer wagon that fit all the luggage quite nicely.

Once we got into the pre-op area, things got much better.  Here's a photo of her in the pre-op room. 

I should have waited because a few minutes after I took this, she got all hooked up with a coloring book, stickers, Disney Channel on the TV, and a bed warmer that shot warm air into her gown that she could control with a little dial button on a remote.  Being the gadget- and button-obsessed child that she is, that was her favorite.  She also got a stuffed bear, and she gets to keep that pink fuzzy blanket.  She got to pick out a flavor of lip gloss that will be smeared onto the mask that they will use to anesthetize her with, so that it smells like watermelon instead of whatever anesthesia smells like.  She was visited by the nurses, another Child Life specialist, the anesthesiologist, and finally the surgeon, Dr. Mary Dunn.  Dr. Dunn was looking quite dapper in a smart silver-gray suit.  She told us it was her birthday today.  I think that's pretty lucky.

Suchitra went off to be watermelon-anesthetized around 7:40 am.  The Disney Channel put her in a really good mood and when they asked if she wanted me to come back with her while they put her to sleep, she said no.  I wasn't too upset about that because it means she was pretty comfortable with the situation.  I took the luggage up to our room on the Rehab Unit, then went to the cafeteria for some breakfast.  I'm now camped out in the surgery waiting room.  They have a big screen where your patient's name is displayed (in code to protect privacy) and some icons that light up to indicate what stage the patient is in, from pre-op to in-op to all done.  I also have a pager so they can get in touch with me as needed.  At about 9:10 I got a call from the anesthesia nurse who said that everything is going well and Dr. Dunn had just begun the procedure.  It is expected to last about 3.5 hours.  Once she is in the recovery room, they will let me know when she begins to wake up.  Last time she had surgery, she was really upset when she woke up and I wasn't right there, so I asked them to let me come and see her as soon as possible.  I got another call at around 10:15 saying her vital signs are good and all is going well.

Waiting kind of stinks, and I'd really like to take a nap, but I do have a good book to get me through the rest of the wait:  What Is the What by Dave Eggers.  It's a novel about the Lost Boys of Sudan.  Very good for perspective.  My ankle is hurting again (I sprained it a couple weeks ago) probably from carrying the luggage, so I have it propped up.  More later!

Ahoy from St. Paul, mateys!

We made it successfully to St. Paul and are having a great time so far!  This time we are staying in a Holiday Inn, which we like better than the Best Western where we stayed in June.  Downtown St. Paul seems to be mostly a collection of extremely large buildings, e.g. Travelers Insurance and the West Legal Publishing Company.  And directly across from our hotel is the Xcel Energy Center, a giant event center where the professional hockey team plays and Madonna is giving a concert in November. 

And down the street a little way is the Science Museum of Minnesota, where we spent the morning before heading to Gillette in the afternoon for appointments.  The Science Museum had a super cool exhibit on pirates that Suchitra and I both loved.  This guy named Barry Clifford has spent the last few decades bringing up artifacts from a pirate ship that shipwrecked off Cape Cod in 1717.  It was called the Whydah (pronounced "widow"), named for the west African city of Ouidah that was a hub of the slave trade.  The Whydah was first a slave ship.  Then a young pirate captain named Sam Bellamy attacked and commandeered it.  He sailed all around the Atlantic Ocean, making a fortune by pillaging and plundering.  But on the way home to Massachusetts, the Whydah got caught in a massive nor'easter and sunk.  All but two pirates were drowned.  Bellamy had several other ships in his fleet, and the survivors plus the other pirates headed for Rhode Island, which was a pirate safe haven.  But almost all of them were eventually caught, put on trial in Boston (where Cotton Mather tried to convince them to repent) and hanged for their crimes.

Apparently pirate ships were totally egalitarian, unlike the military and merchant vessels also plying the seas at that time.  The merchants were busy stuffing African slaves into their ships' holds, and the navies treated their crews terribly - harsh discipline, bad food, little pay if any.  Whereas pirates all got to share the booty and everyone was treated equally, whether of European, African, or Native American descent.  For example, only if there were enough hammocks on the ship would everyone get to sleep in a hammock.  If there weren't enough, everyone slept on the deck.  Not surprising that when pirates captured other ships, many of the captured crew decided to join the pirates.  Sam Bellamy's ship even had a nine-year-old pirate named John King.  He was on a ship that was taken by Bellamy's crew.  He demanded to join them and when his mother protested, he threatened to kill her.    Unfortunately (or maybe appropriately) he didn't get to enjoy piracy very long before sinking with the Whydah.  Found in the wreck, and displayed in the exhibit, was all that remains of him - a silk stocking, a fancy shoe, and a little tibula.

The other items brought up from the Whydah's watery grave were amazing too - weapons and cannons, the ship's bell, and of course lots of gold and silver!  Both of us thought the coolest part of the exhibition was the replica pirate ship that you could go inside, complete with creaky floors and seagull cries.  Suchitra also got some pirate trader cards, one depicting a fierce female pirate named Mary Read.

Aaaargh, I'm getting totally off topic!  Back to Suchitra's surgery.  At Gillette today, we learned a lot about what the upcoming weeks will hold.  We toured the surgery area and the rehab unit where we will be living.  A child life specialist explained the surgery in great detail and answered all of Suchitra's questions about it.  She was fitted for knee immobilizers that will keep her legs straight, and we saw a prone cart where she will be lying on her stomach, to stretch out her hips and also until she gets strong enough to sit up.  The cart can be wheeled around.  I'll have to post some pictures, it's hard to describe. 

She also had baseline evaluations for occupational and speech therapy.  Speech therapy she doesn't need, of course.  I'm excited about OT because there is a good chance she will be able to dress herself as a result of this surgery.  Right now, it's a huge challenge given that her legs are so tight.  So OT will help with that.

The rehab unit looks like a typical hospital unit.  The rooms are quite small and will be shared with one other patient with only a curtain between.  I think this is going to be a big challenge for me - no privacy and probably not much quiet.  There is a Ronald McDonald unit in a different wing that we didn't get to see, but apparently has a nice kitchen and dining area.  As when we were here in June, the hospital is a very busy place with lots of people going and coming at all times.  We did learn that there will be lots of activities to keep Suchitra busy.  Each day will be scheduled with physical and occupational therapy, school, and evening fun activities like birthday parties, dog shows, and games.  I know she will love it.

Okay, time to sign off as I have to give Suchitra a shower and get her to bed if I can pry the TV remote from her little clutches.  We have to be at the hospital at 6 am tomorrow for her 7:30 am surgery, along with all our luggage (two suitcases, two backpacks, and one duffel).  I am fighting off a cold so trying not to infect her, which would not be helpful.  Thanks for reading and we love getting your emails and comments!

Why am I writing this blog?

I'm creating this blog as a way to keep family and friends updated on Suchitra's selective dorsal rhizotomy (SDR) surgery and rehabilitation.  Her surgery date is August 29, 2012 at Gillette Children's Specialty Healthcare in St. Paul, Minnesota.  We will be flying from Portland to Minneapolis/St. Paul on August 27. We plan to return on September 30, 2012.

Here is some background on SDR. It's a neurosurgery that is done to relieve symptoms of spastic diplegia, which is the type of cerebral palsy Suchitra has.  (Spastic refers to the muscle tightness or "tone" and diplegia refers to the fact that only her legs are affected, not her arms.)  Research over the past couple decades has shown SDR to be safe and effective.  In this surgery, an incision is made in the spinal cord through the back, and the nerves that cause spasticity are isolated and then cut.  There will be enough healthy nerves left to allow her muscles to function normally without the spasticity.  However, her muscles will be much weaker, and she will have to relearn all of her motor skills, including normal movement and daily tasks, during an intensive recovery period.  This is why we will have to stay at the hospital for four weeks after the surgery.

While there are several hospitals nationally that specialize in SDR, Gillette is one of the best, especially for their rehab program.  We traveled there at the end of June for an evaluation.  After examining Suchitra, a team of doctors including a neurosurgeon, an orthopedic surgeon, and a physiatrist told us that she would be an excellent candidate for the surgery.  We had a long discussion about the risks, benefits, and potential outcomes.  Obviously there are no guarantees with any medical procedure, but I feel like we're making the right choice with the best chance of improvement for Suchitra.  One thing that is kind of cool is that on Gillette's website and some others, you can see before-and-after videos of kids who have had SDR.  While the degree of improvement depends on how severely affected the child was before the surgery, for many kids the difference is quite noticeable.

While we are there, I'll be staying right in the hospital room with Suchitra and helping out during her recovery.  She shouldn't fall too far behind in school because Gillette has a teacher that works with the kids who are patients there.  Most of the time will be spent in physical and occupational therapy.  Gillette's approach is to start with the most basic motor skills, e.g. rolling over and sitting up, and then progressing to more complex skills as each is mastered.

Once we return home to Portland, Suchitra will have to do physical therapy five days a week for at least a month, then tapering down to three and two days per week afterward for probably a year.  This is a lot more physical therapy than we do now so it will definitely have a big impact on our lives.  The doctors also said that we will need to return in a year or so as she will very likely need orthopedic surgery to correct muscles and bones that have been pulled out of position by the spasticity.  If we did not do SDR, she would probably have to have multiple rounds of orthopedic surgery, possibly up to 15 surgeries.  So doing SDR now will avoid having to undergo a lot more surgery later on.

My impression is that the main benefits we should eventually see for her are a steadier, more normalized gait and less effort to take each step, so much better endurance.  At the evaluation, Gillette measured Suchitra's oxygen consumption level and found that she uses 3.8 times the amount of oxygen that a non-disabled person uses to walk.  This means that for her, walking is like taking the stairs two at a time would be for us.  After SDR, her oxygen consumption should go down 30% and after further orthopedic surgery, it could go down 50%.  The surgery will also help avoid increasing pain and decreasing function as she gets older.

I am optimistic that Suchitra will work hard with a good attitude as she does during her physical therapy sessions here at home.  She's very excited about the surgery and realizes it could make a big difference for her.

If anyone feels inclined to send mail, she would love it!  The address is:

Suchitra Goracke
Rehabilitation Unit
Gillette Children's Specialty Healthcare
200 University Ave. E.
St. Paul, MN  55101

If you have any questions, let me know and I'll do my best to answer them!  Thanks for reading and following our journey!