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: